Child autonomy in the doctor-patient relationship is a complex issue that involves balancing the child’s right to self-determination with the need for protection and guidance from parents and healthcare providers. There are many nuances to child autonomy in medical settings, which can be seen through the examination of bioethical principles and legal frameworks.
The foundation of patient autonomy lies in the bioethical principle of respect for persons, which holds that individuals should be treated as autonomous agents and that those with diminished autonomy, such as children, are entitled to protection. In the medical context, autonomy is operationalized through the doctrine of informed consent, which requires that patients be competent to make decisions, receive full disclosure of relevant information, and give voluntary consent to treatment. However, these standards do not extend automatically to children, who lack the capacity for adequate decision-making and therefore require a surrogate decision-maker, typically a parent or guardian.
The question of when and to what extent children should be involved in medical decision-making is a matter of ongoing debate. From a legal perspective, the age at which minors can independently consent to treatment varies across jurisdictions. In North Carolina, for example, minors can consent to certain sensitive services such as STD testing, drug and alcohol use, pregnancy, and mental health treatment, but for most other interventions, parental consent is required, especially for vaccines. The experiences and perspectives of physicians, parents, and children themselves also offer valuable insights. In a study by Rodríguez-Domínguez et al., nearly half of the surveyed minors believed that 16 was an appropriate age to make health decisions, while parents were more likely to favor 18 as the threshold. Both groups acknowledged that the suitable age for involvement depends on the complexity of the situation.
Furthermore, research has shown that children’s ability to participate meaningfully in healthcare decisions depends on a range of factors beyond age, including cognitive development, emotional maturity, experience with illness, and family dynamics. Cultural and religious attitudes also shape perceptions of children’s autonomy, with more individualistic societies tending to grant children greater independence and more religious or socio-centric cultures emphasizing parental authority and children’s obedience (Durà-Vilà & Hodes, 2020). Parsapoor et al. further illuminate the challenges of respecting child autonomy in light of cultural and religious norms. In Iran, for example, the age of medical decision-making is tied to the Islamic concept of Taklif—15 lunar years for boys and 9 for girls. The authors argue that this gender discrepancy is unjustifiable and advocate for a uniform, higher age of consent. They also emphasize the need for case-by-case assessment of decision-making capacity, even after the age of Taklif. An oral history by Tammy Blackman details how her experience as a young Latina daughter consisted of attending doctor appointments alone while Albrea Crowder discusses how she feels the need to be included in every medical decision being made with respect to her son. While these interviews do not delve into the explanatory root causes of the interviewees’ behaviors, they highlight how a child’s freedom in a hospital room differs from family to family. In other words, there is no one-size-fits-all approach to ameliorating the complexities of child autonomy in medical settings.
To complicate matters further, the triadic nature of the pediatric encounter—consisting of the child, the parent, and the physician—creates challenges for respecting child autonomy. As Paron and Kutsar argue, the “patient’s duality” in this context means that children’s autonomy is negotiated relationally and should consider the child’s preferences, parental responsibility, and professional expertise. In cases of disagreement between child and parent, the physician must navigate carefully, seeking to understand and mediate between competing interests while upholding the child’s developing personhood.
While parents have the legal authority to make medical decisions on behalf of their children, this power is not absolute. As the American Academy of Pediatrics asserts, physicians have an ethical obligation to intervene if parental choices constitute medical neglect. This is the case if the refused treatment offers significant net benefit to the child and the anticipated benefits substantially outweigh the harms. Religious objections to care do not exempt parents from this standard. When medical neglect is suspected, pediatricians should work with families to understand barriers, educate parents on the need for treatment, and connect them with resources. In extreme cases, physicians can refer the case to child protective services or obtain a court order to override the parents’ decision. The potential for medical child abuse, also known as Munchausen syndrome by proxy, should also be considered. In such cases, a lack of defined child autonomy regulations may leave children vulnerable to unnecessary and harmful medical interventions instigated by their caregivers. Physicians have an ethical duty to be alert for signs of this abuse and to take appropriate action to protect the child accordingly.
Ultimately, the ethical imperative in pediatric decision-making is to promote the child’s best interests while nurturing their emerging autonomy. Physicians have an ethical obligation to appropriately engage and inform pediatric patients to foster their developing autonomy, build trust, and improve healthcare experiences and outcomes. However, doctors must balance the child’s autonomy with parental preferences and the child’s level of maturity and comprehension. A trusting doctor-patient relationship enhances pediatric patients’ confidence and willingness to participate. This requires a development-centric, collaborative approach that engages children while valuing their agency. Parents remain integral to this process, but their role should shift from protective to preparatory as their child matures. Meanwhile, the physician serves a dual duty: to safeguard the child’s health in the present, and to equip them with the skills to assume greater control in the future.
In conclusion, respecting child autonomy in the medical context demands a nuanced, individualized approach that accounts for the child, the family’s values and dynamics, and the specifics of the clinical situation. While the triadic nature of pediatric encounters complicates this effort, it also offers rich possibilities for fostering children’s growth. By engaging children as active partners in their care, eliciting and honoring their preferences, and mediating sensitively between child and parental perspectives, physicians can uphold the core bioethical principles while empowering their young patients to take ownership of their health and healthcare. Achieving this delicate balance will require ongoing dialogue between bioethicists, clinicians, policymakers, families, and children themselves, to ensure that the right to autonomy is realized in a manner that protects and promotes the flourishing of all.
References:
Blackman, T. (2018). Southern Oral History Program. other. Retrieved 2024, from https://dc.lib.unc.edu/cdm/compoundobject/collection/sohp/id/27936/rec/2316.
Crowder, A. (2018). Southern Oral History Program. other. Retrieved 2024, from https://dc.lib.unc.edu/cdm/compoundobject/collection/sohp/id/27951/rec/2317.
Durà-Vilà, Glòria, and Matthew Hodes. “Cultural and Religious Variation in Attitudes to Young People Consenting to Health Interventions.” Journal of Religion and Health, vol. 59, no. 2, Aug. 2018, pp. 870–90, https://doi.org/10.1007/s10943-018-0686-z.
Jenny, C. “Recognizing and Responding to Medical Neglect.” PEDIATRICS, vol. 120, no. 6, Nov. 2007, pp. 1385–89, https://doi.org/10.1542/peds.2007-2903.
Klein, Sarah. “How Doctors Can Get Better at Recognizing Munchausen Syndrome by Proxy.” TIME, 18 Apr. 2024, time.com/6968672/recognizing-munchausen-syndrome-by-proxy/.
Leloudis, Kirsten. “What’s the Status of North Carolina’s Minor’s Consent Law after S.L. 2023-106?” Coates’ Canons NC Local Government Law, 28 Aug. 2023, canons.sog.unc.edu/2023/08/sl2023-106-and-minors-consent/.
Luchtenberg, Malou L., et al. “Understanding the Child-Doctor Relationship in Research Participation: A Qualitative Study.” BMC Pediatrics, vol. 20, no. 1, July 2020, https://doi.org/10.1186/s12887-020-02243-1. Accessed 17 Sep. 2020.
Paron, Kristi, and Dagmar Kutsar. “Creation of Child-Patient’s Autonomy in a Child-Parent-Doctor Relationship: Medical Doctors’ Perspectives.” Childhood, vol. 30, no. 2, Apr. 2023, pp. 145–60, https://doi.org/10.1177/09075682231169615.
Parsapoor, Alireza, et al. “Autonomy of Children and Adolescents in Consent to Treatment: Ethical, Jurisprudential and Legal Considerations.” Iranian Journal of Pediatrics, vol. 24, no. 3, Tehran University of Medical Sciences, June 2014, pp. 241–48, www.ncbi.nlm.nih.gov/pmc/articles/PMC4276576/.
Rodríguez-Domínguez, Francisco J., et al. “Involvement and Autonomy of Minors in Medical Settings: Perceptions of Children Undergoing Surgery and Parents.” Children (Basel), vol. 10, no. 12, Multidisciplinary Digital Publishing Institute, Nov. 2023, pp. 1844–44, https://doi.org/10.3390/children10121844.
Smith, Timothy. “Pediatric Decision-Making: Help Parents Protect, Empower Kids.” American Medical Association, 2019, www.ama-assn.org/delivering-care/ethics/pediatric-decision-making-help-parents-protect-empower-kids.
Varkey, Basil. “Principles of Clinical Ethics and Their Application to Practice.” Medical Principles and Practice, vol. 30, no. 1, Feb. 2021, pp. 17–28, www.ncbi.nlm.nih.gov/pmc/articles/PMC7923912/.