Purpose Adolescents develop their decision-making ability as they transition from childhood to adulthood. Participation in their medical care should be encouraged through obtaining assent, as recommended by the American Academy of Pediatrics (AAP). In this research, we aim to define the current knowledge of AAP recommendations and surgeon practices regarding assent for elective reconstructive procedures.
Methods An anonymous electronic survey was distributed to North American paediatric surgeons and fellows through the American Pediatric Surgical Association (n=1353).
Results In total, 220 surgeons and trainees responded (16.3%). Fifty per cent of the surgeons who are familiar with the concept of assent had received formal training; 12% of the respondents had not heard of assent before the survey. Forty-seven per cent were aware of the 2016 AAP policy statement regarding assent in paediatric patients. Eighty-nine per cent always include adolescents as part of the consent discussion. Seventy-seven per cent solicit an expression of willingness to accept the proposed care from the patient. The majority (74%) of the surgeons perceived patient cooperation/understanding as the biggest barrier to obtaining assent. Over half of the respondents would consider proceeding with elective surgery despite the adolescent patient’s refusal. Reasons cited for proceeding with elective surgery include surgeons’ perception of medical necessity, perceptions of disease urgency, and lack of patient maturity.
Conclusion Paediatric surgeons largely acknowledge the importance of assent, but variably practice the principles of obtaining assent from adolescent patients undergoing elective reconstructive procedures. Fewer surgeons are explicitly aware of formal policy statements or received formal training. Additional surgeon education and institutional policies are warranted to maximise inclusion of adolescents in their medical care.
- Informed Consent
Data availability statement
Data are available upon reasonable request.
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The practice of informed consent has always been a cornerstone of the patient–surgeon relationship. In the adult population, informed consent is defined as the authorisation by the patient to the surgeon to perform an intervention after the surgeon has disclosed the risks, benefits, and alternatives of the proposed intervention. This must be done in a manner that the patient can understand while demonstrating capacity and sound judgement. However, the concept of informed consent for paediatric and adolescent patients has constituted a unique ethical area in surgery where the surgeon gives the responsibility of informed consent to the child’s parent or legal guardian who assumes a fiducial obligation to protect the well-being and autonomy of the child without necessarily obtaining the child’s assent.1
There is a growing body of literature about assent over the last 40 years.2–5 Assent itself attempts to empower the child and provides a sense of agency allowing them to develop their sense of identity. In 2016, the American Academy of Pediatrics (AAP) released an update to their previous statements on informed consent of the paediatric and adolescent patient including: (1) involving paediatric patients in decision-making in a developmentally appropriate manner and seeking their assent to medical care whenever appropriate, (2) recognising that older adolescent patients and those with medical experience due to chronic disease may possess adequate capacity and judgement to engage effectively in the informed consent, and refusal process for goals of care and (3) dissent by the paediatric patient should carry considerable weight when the proposed intervention is non-essential and/or can be deferred without substantial risk.6 Assent should consist of four elements, as indicated in box 1.
Four elements of assent discussion for paediatric patients
Help the patient achieve a developmentally appropriate awareness of the nature of their condition.
Tell the patient what they can expect with tests and treatments.
Make a clinical assessment of the patient’s understanding of the situation and the factors influencing how they are responding (including whether there is inappropriate pressure to accept testing or therapy).
Solicit an expression of the patient’s willingness to accept the proposed care.
Adapted from Katz AL, Webb SA. Informed consent in decision-making in pediatric practice. Pediatrics 2016;138. https://doi.org/10.1542/peds.2016-1484. Committee on Bioethics. Informed Consent in Decision-Making in Pediatric Practice. Pediatrics. 2016;138(2):e20161484. doi:10.1542/peds.2016-1484
As adolescents develop their decision-making ability in the transition from childhood to adulthood, participation in their medical care should be encouraged through obtaining assent. We aim to define the current knowledge of AAP recommendations and surgeon practices with respect to assent for elective reconstructive procedures.
A survey was developed for electronic distribution by the American Pediatric Surgical Association to paediatric surgeon members in North America. Fellows were included as they are certified adult general surgeons undertaking further specialty paediatric surgery training; resident and medical student members were excluded. All recruitment and study procedures were reviewed and approved by the Institutional Review Board. Written informed consent was waived.
The survey queried knowledge and attitudes regarding AAP assent recommendations and current practices with assent for elective reconstructive procedures (ie, chest wall, abdominal/intestinal, pelvic) in adolescents (supplementary file 1). IBM SPSS Statistics (V.18, 2009, IBM Corporation) was used for statistical analysis. For qualitative analysis, comments were reviewed by two authors (KL and EMW) to identify themes—agreement regarding differences was reached through discussion to reach a consensus.
A total of 220 surgeons and fellows responded for a response rate of 16.3%. Among them, 71% of the respondents practice in academic settings and 64% have over 10 years of experience. There was a large breadth of subspecialties represented (table 1).
The majority of the respondents were familiar with the concept of assent with 50% of this group having received formal training on the topic (table 2). Surgeons (including fellows) largely included the adolescent patient in consent discussions, with patient wishes (95%) and developmental age/maturity (95%) as the greatest factors influencing the surgeons’ decisions to do so. Eight per cent of the respondents believed there is no difference between informed consent and assent and 86% believed that assent is equally or more important as parental permission/consent. When asked if they would still proceed with an elective procedure if an adolescent patient refused to give assent, 2% indicated that they would and 55% stated ‘it depends’'. Free-text reasons cited include surgeons’ perception of medical necessity, the risks of not proceeding with surgery, and patient maturity. Table 3 highlights six major themes of reasoning expressed by respondents: shared decision-making through education, potential of negative consequences, medical necessity, patient anxiety/fear, patient maturity/capacity to assent, and parental wishes. Representative comments are shown in table 3.
Among the respondents 47% were aware of the 2016 AAP policy statement regarding assent in paediatric patients. Of the four elements of the policy statement (table 4), the large majority of surgeons ‘often’ or ‘always’ considered them during discussions. The largest barriers indicated to obtaining assent were patient cooperation/understanding (74%), parental cooperation (51%), and complexity of procedure (43%). Language barrier, time constraints, and surgeon familiarity with assent were lesser cited reasons. One respondent commented ‘there should never be barriers to obtaining patient’s assent—it’s their body on which we are operating’. Another expressed a desire for support with the need for ‘my hospital/institution to have guidelines as well’.
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.
Overall, this survey study indicates that paediatric surgeons understand the principles of assent at a high level when treating adolescent patients in the elective setting, but its practice and application remain highly variable and thus it is an area for further provider education and development. While there is no definitive age when the adolescent is ready cognitively and developmentally, participation in assent respects their autonomy, promotes shared decision-making, and exercises their skills and capacity to provide informed consent as adults. Institutional policies regarding assent are warranted to support surgeons in this process.
Data availability statement
Data are available upon reasonable request.
Patient consent for publication
This study involves human participants but Phoenix Children’s Hospital Institutional Review Board exempted this study. Participants gave informed consent to participate in the study before taking part.
Contributors KL, EMW, and KvL contributed to conception, design, data acquisition/analysis/interpretation, manuscript drafting, and critical revisions. NSR contributed to data acquisition/analysis/interpretation, manuscript drafting, and critical revisions. All of the authors agree with the final version of the manuscript. KvL is the guarantor.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
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