Should Assent Always Be Obtained From Pediatric Patients Undergoing Elective Procedures?

The patient is a 12-year-old male with right microtia, aural atresia, and associated maximal conductive hearing loss. He was brought to the clinic by his adoptive mother who wanted to advocate for a surgical bone conduction implant hearing device. The patient has a history of learning difficulties and dyslexia and has not been compliant while using a nonsurgical bone-conduction hearing device. His mother reports that he is not doing well in school despite trying and that his hearing is holding him back. He reports the headband is uncomfortable and feedback from the device is a distraction. A surgical bone conduction implant could improve both of those concerns, but would still require an external component that is held in place by a magnet, although instead of a headband. The patient was tearful during the visit and expressed a preference to not use a hearing aid at all. He has had negative comments regarding his smaller misshapen right ear and does not like being different. His mother is adamant that he proceed with the surgery and would eagerly consent. Should the surgeon schedule this elective surgery without the pediatric patient's assent? Assent is not necessary for adolescent patients undergoing elective procedures since the consenting guardian has a duty to act in the child's best interest. Minors are a vulnerable group. In their guidelines on pediatric informed consent, the American Academy of Pediatrics (AAP) notes that “many, if not most, patients in pediatric practice lack the agency required to be truly autonomous agents.”1 This assertion is evident outside of medicine as well, where laws governing the age of majority are ubiquitous. Medical or otherwise, society has agreed that minors require extra care and attention through the protection of a legal guardian until they are mature enough to make decisions for themselves. The capacity to decide requires an ability to communicate one's wishes, an understanding of the medical situation and the proposed treatment, an appreciation for the consequences of accepting or refusing the treatment, and consistent reasoning.2 Capacity is typically assumed for adult patients unless there is evidence to support otherwise. Psychiatric conditions, traumatic injuries, or substance abuse can all impact a patient's ability to communicate, understand, appreciate, and/or reason. For children, the capacity to decide is incumbent on their cognitive development and subsequent ability to make sound judgments, neither of which may progress at the same pace as their physical development. Even a socially precocious adolescent is still neurochemically developing into their adult self.3 While the 12-year-old boy in this case is able to communicate his wishes, understand the treatment, and maybe even appreciate the consequences of his decision, he is likely not developmentally mature enough to consistently reason through that information. As the patient's judgment and sense of self continues to develop, he may weigh the risks and benefits of the procedure differently. Right now, his comfort and social interactions are most important to him, but in a few years, he may realize that his ability to learn was the most important factor in this decision. Elective procedures can also be necessary or helpful to a child's wellbeing. For example, hearing loss has long been known to negatively affect a child's ability to learn.4 While every state maintains a legal age of majority, almost every state makes stipulations for certain social and medical situations, notably the right of many minors to consent for sexual, reproductive, or infectious health care. Some states extend this right to any medical condition or treatment for adolescents of a certain age or maturity and a few have even broader mature minor doctrines that allow any minor, regardless of age or circumstances, to consent to medical care. However, several legal cases over the last 2 decades, along with evolving data on the neurodevelopment of adolescents, have called into question the sociopolitical and scientific validity of mature minor doctrines.5 While the legal ability of minors to make their own health care decisions is expanding, much of the discretion still remains with the physician providing care.6 Even before they are old enough to make their own decisions, children still deserve to be treated with dignity and respect. The AAP recommends including the child in the decision-making process.1 Providers should help the child understand what is happening to them and what to expect, in a developmentally appropriate way. However, if the best course of action has already been decided by the physician and guardian, obtaining assent is disingenuous, disrespectful, and potentially harmful. For this reason, the AAP does not recommend seeking assent if it will not be honored. In this case, the patient's legal guardian is understandably concerned about his hearing and worried about his learning during this key time in his educational development, which could have long-term consequences. While the patient's concerns about social stigma and discomfort are understandable, they do not outweigh the potential benefit of a surgical bone conduction implant device. Although the patient's guardian can take his objections into consideration, it is ultimately their decision. In practice, most surgeons seem to follow the AAP guidelines. A 2023 survey of pediatric surgeons showed that 89% always include adolescents in the consent discussion but over half of respondents would consider performing an elective reconstructive surgery on an adolescent without assent, largely based on arguments of medical necessity and a lack of patient maturity.7 The consequence of proceeding with surgery despite an adolescent's dissent is a violation of their bodily autonomy, the same consequence that must be considered when treating adults who lack capacity. Laws that govern the age of majority and tools like the Aid to Capacity Evaluation help clinicians balance their desire to respect the autonomy of their patients with their duty to protect their patient from potentially harmful medical decisions.8 Sometimes, these decisions are easy. A 15-month-old girl cannot refuse her measles vaccine just because it hurts and a 16-year-old should be able to refuse a cosmetic rhinoplasty even if her mother consents to the procedure. Other times, like in this case, the choice can be more difficult. Ultimately, if the surgeon and guardian feel that a surgical hearing device will benefit the child's learning, despite the social stigma of hearing devices, they should proceed and not offer the adolescent an opportunity to formally dissent. Clinicians should feel supported by the AAP to decide on the best course of action with the child's guardian, inform the patient of the choice at a developmentally appropriate level, and only obtain assent if it can and will be honored. Assent should be obtained for adolescents undergoing elective procedures if they are mature enough to demonstrate capacity. Although there is variety in the legal landscape of a minor's right to make their own medical decisions, the question of necessary assent for adolescents is primarily an ethical one. When the AAP guidelines state that pediatric patients “lack agency” they fail to discern between an extrinsic lack of agency from their status as a minor and a true lack of intrinsic agency because of their development.1 This distinction matters for pediatric providers routinely engaged in complex moral work, balancing respect for the self-determination of their developing patients with that child's best interest. Many lessons can be learned from capacity evaluations for adults. A complicated and subjective judgment must be made to fairly balance a patient's right to autonomy with a provider's duty to promote their well-being.9 Capacity evaluations are time-limited and situation specific. A patient may be able to consent to some interventions and not others, at some times and not others. Similarly, a developing adolescent may be ready to participate fully in some medical decisions but not yet ready to participate in others. Emergent and life-threatening medical conditions are not the time to explore adolescent readiness for complex medical decision making, but requiring their input for elective surgical procedures adds depth to the informed consent conversation. Wasserman et al describe this idea as a form of “epistemological humility” in their 2019 response to the 2016 AAP guidelines.10 They argue that asking permission requires a more genuine exploration of the reasoning and preferences of the child, which could potentially change the opinion of the provider or guardian. For example, in this case, requiring assent forces a more direct negotiation between the child, provider, and guardian. Perhaps the adolescent will realize the importance of the implanted hearing device, or the guardian will better understand the harm of the device and look for other solutions to support their child in school. At the very least, it forces the provider and guardian to directly confront the harms of treating the patient over their objection. The complex process of informed consent is made richer by including the perspective and reasoning of the pediatric patient, in addition to the provider's recommendation and the guardian's feelings. Making decisions is already difficult for parents. The small amount of data on medical decision-making for elective pediatric otolaryngology procedures reveals a low level of shared decision-making and frequent decisional conflict.11, 12 Observed shared decision-making improved when the surgeon spent more time on the consultation. Another study demonstrated very poor parental recall of the risks and benefits of the proposed procedure that was not affected by parental education level or provider factors.13 If parents have so much trouble making sound, confident, informed decisions on their own, why not include the adolescent in the conversation? Requiring pediatric assent for elective procedures would likely increase the time spent with the family, enhance shared decision-making, and improve the depth of the conversation regarding risks and benefits. Even if the provider ultimately decides to treat a child over their objection, there is value in the preceding negotiation. The perspectives of pediatric patients matter even if they are not the sole determinant in their care and providers should be clear about their ability to honor them. As pediatric patients develop, their preferences and reasoning should begin to carry more weight during medical decision-making. While arguments about the clinical neurochemical development of the adolescent brain may offer some context for their medical decision-making, they should not prevent them from participating altogether. Requiring assent from adolescents for elective procedures honors this evolving ability to reason and acknowledges the complexity of medical decision-making. There is also an element of justice in this ethical dilemma. The hearing implant and surgery are costly and only useful if the child wears an external device. If the patient in this case refuses to wear the device, then performing the surgery over his objection may not even provide a predictable benefit. Weighing the potential improvement in learning against the likeliness he will wear the device is difficult and likely unknowable, but requiring assent for procedures like these could increase the likelihood of a positive outcome. Considering this type of impact is perhaps more appropriate for formulating policy, but could be an important consideration on an individual level, particularly if there is evidence that a significant number of children do not go on to use the device. While the AAP guidelines clearly do not require assent from pediatric patients, many pediatricians have offered their disagreement over the decades.10, 14 There is also little specific discussion in these guidelines about invasive, elective surgical procedures. In this case, when the proposed elective procedure involves an implant that can be challenging to remove, obtaining assent from the adolescent patient feels particularly necessary. The semipermanence of the implant increases the potential harm in proceeding over the child's objection since he will have to live with the device every day. Furthermore, obtaining assent could have a lasting positive impact on the patient's understanding of his ownership and stewardship of his own body, which is definitively undermined by proceeding against his will. Requiring assent from the adolescent patient in this case does not close the door on hearing rehabilitation, but instead opens the door to other creative solutions for the provider, parent, and patient and an ongoing discussion between them about the best treatment plan. Antoinette Esce, paper conception, administrative support, manuscript drafting and revisions; Jonathan Bolton, paper conception, manuscript revisions; Tania Kraai, paper conception, manuscript revisions. The authors have no conflicts of interest to report. This project was not supported by any external grants or funding.