Discussion

Assent in paediatric medicine is the concept of voluntary willingness to participate in and accept care. For adolescents, this is particularly important as they transition from childhood to adulthood and begin to build their independent decision-making capacity. Seeking assent from adolescents for surgery is an invitation for active participation in their care and should emulate the informed consent discussion. The AAP 2016 policy statement advocates that assent be obtained whenever age appropriate,6 supporting the model of shared decision-making and patient-centred care in contemporary medicine.

The results of this survey demonstrate that overall, paediatric surgeons have a high level of awareness on the concept of assent and regularly include adolescents in the consent discussion. However, a lower proportion of surgeons subsequently seek an expression of willingness, perhaps reflecting the presence of the barriers to assent discussed in the survey. This difference may also be explained by surgeons defining assent differently than the AAP, where assent at minimum includes the four elements from table 1. From a practical perspective, the definition and application of assent by the surgeon may primarily consist of education, information sharing, and open disclosure of the treatment and its outcomes. This is demonstrated in one study investigating the attitudes and practices of paediatric proceduralists where the authors found that 74% thought the main goal of assent was to educate, compared with 35% who thought the main goal was to seek agreement from the child.7 The surveyed clinicians felt the process of educating fostered a trusting relationship and showed respect to the child as a person. Yet, most still viewed the child’s opinion on the procedure as non-binding, even for elective situations. The emphasis on education is important, as one study pertaining to children’s assent in clinical research found that 53% did not know they had a choice.8

Parental wishes were another reason cited by survey respondents to proceed with elective surgery despite the adolescent patient’s refusal. In the realm of consent in paediatrics, parental permission is the medical and legal standard.9 It is presumed that parents have a fiduciary responsibility to act in the best interest of the child, not unlike a physician’s responsibility of beneficence and non-maleficence.10 With both parties acting with the same goals, shared decision-making becomes key in creating and maintaining trusting patient–provider relationships. With adolescents whose intellectual maturity and individual identities are developing,11 their participation in shared decision-making in their medical care fosters their burgeoning autonomy.12 An active role in their healthcare may also promote compliance with treatment.13 14 The United Nation’s Convention on the Rights of the Child15 promotes the idea that children should not only have a good understanding of their condition or treatments, but also be participants in decisions regarding what occurs with their bodies. When the adolescent patient refuses, medical necessity and consequences of inaction likely play a large part in a surgeon’s decision. As numerous respondents stated, elective is not synonymous with unnecessary, especially in oncology. An adolescent patient’s refusal should be considered within the context of their personal experience and medical history; those who have chronic illness or have experienced a severe illness often have increased capacity for understanding and risk-benefit consideration in their decision-making.16 Alderson suggests that experience with their own medical history such as with chronic conditions drives a child’s competency, rather than age or maturity.17 In the realm of clinical research, many institutional review boards mandate assent starting in children younger than adolescence.

While there is no definitive cut-off when an adolescent becomes ready cognitively and emotionally for decision-making, they can handle abstract thinking and complex decisions by mid-adolescence.9 The 2016 AAP policy states that children as young as 7 years of age can participate in assent to promote moral growth and development of autonomy as they begin to handle concrete and logical processes.9 Grootens-Wiegers et al proposed that children become competent to make decisions at 12 years old, the beginning of adolescence, based on when children acquire and develop the key skills required for decision-making.18 However, the authors acknowledge that this coincides with developing risk-reward thinking, self-regulation, and influence of peers, all of which also affect decision-making. Despite the lack of a clear-cut age where adolescents are deemed competent for independent decision-making in their own healthcare, adolescent parents are the legally authorised representatives providing informed consent for their children.9 Regionally, there is significant variation in an adolescent mother’s independent ability to consent for prenatal care, termination of pregnancy, and contraception for herself and her baby.19 In the UK, patient age is not a factor for providers and they are protected by law, as long as they can affirm the child had competency to consent.17 Given these uncertainties, assent should be an individualised, well-defined process with guidelines within each institution based on local and regional laws. These guidelines would provide the consistency and structure necessary to overcome system barriers such as time and surgeon familiarity with assent.

Research into paediatric assent in the field of surgery is developing. A systematic review identified 12 studies that primarily explore information, comprehension, and recall from the parental perspective.20 With respect to providers, Lee et al interviewed 35 procedural providers including physicians and advanced practice providers regarding their knowledge, attitudes, and practices in paediatric assent.7 In other paediatric specialties, namely oncology, there is a more robust body of work relating to adolescents and assent. Pyke-Grimm et al reviewed 21 articles studying treatment decision-making of adolescents and young adults with cancer.21 Studies reported adolescents as having a range of preferred involvement in treatment decision-making from complete deference to independence with varying levels of parental influence. Overall, the authors concluded that adolescent participation is situational and varies with ‘chronological and developmental stage, disease state, previous experience with disease, type and magnitude of the decision, and decisional and family context’. In paediatric anaesthesia, Feinstein et al reviewed 22 studies of informed consent.22 Five studies examined provider-related outcomes including time spent, training on consent, and satisfaction.

While the respondents in this study mostly reported practicing the four elements of assent of the AAP recommendations (table 4), which reflect the general principles of informed consent,23 existing literature suggests that physicians often do not meet the minimum standards when obtaining informed consent.23 In a study of 3552 clinical decisions by primary care physicians and surgeons, audiotape analysis of their informed consent discussions, only 9% met the authors’ definition of completeness for informed decision-making. Their definition comprised of seven discussion elements that included patient’s role, clinical issue, alternatives, risk/benefit analysis, uncertainties, assessment of patient understanding, and exploration of patient preference. Among these elements, patient understanding (1.5%), uncertainties (4.1%), patient role (5.9%), and risk/benefit analysis (7.8%) were the least observed.

From this study, assent for adolescents undergoing elective procedures is an area of variation in care. Efforts should be invested to increase knowledge among paediatrics surgeons on how to effectively engage adolescents in the process. This includes formal training regarding the principles of assent and practical tips on how to obtain it with support from institutional policies and culture. Education offered at the national level by governing bodies and organisations would maximise the awareness and the reach. Studies in residents demonstrate improved understanding and performance of informed consent and adolescent assent after teaching sessions (case-based, small group, didactic).24 25 Policies should address next steps if a child refuses to provide assent. Comments in the survey (table 3) highlighted the need to discuss further and gain understanding of the reason for refusal, which could be addressed by repeat office visits after the patient has had time to comprehend the information and/or involvement of other specialists such as child life and psychology.

There are limitations to this survey study by design. The low response rate may limit generalisability to the paediatric surgeon body in North America. Additionally, cultural and legal practices may differ in international countries. Nuances in reasoning and practice may also not be captured in the responses. This study only sought to explore surgeon self-reported attitudes and practices, but further work corroborating this with practice observations and patient/family perceptions are complementary and important.