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Why is it hard to make progress in assessing children's decision-making competence?
Irma M Hein1, Pieter W Troost, Alice Broersma
1Department of Child and Adolescent Psychiatry, Academic Medical Center Amsterdam, Meibergdreef 5, 1105 Amsterdam, AZ, The Netherlands. i.hein@debascule.com.
Insights
Assessing children's medical consent competence requires standardized methods. Research is needed to understand factors influencing competence and develop better assessment tools for children aged 7-18.
Area of Science:
- Pediatric healthcare ethics
- Informed consent research
- Child psychology
Background:
- Children's medical consent competence is debated, focusing on normative concerns with limited clinical practice advancement.
- Current assessment of children's decision-making competence lacks standardization.
- The relationship between age and informed consent competence in children, and contributing factors, remain under-investigated.
Purpose of the Study:
- Identify gaps in understanding children's medical decision-making competence.
- Suggest approaches to overcome research obstacles.
- Advance policies and practices for pediatric informed consent.
Main Methods:
- The study proposes an empirical approach to address research gaps.
- Recommends developing a standardized assessment instrument.
- Advocates for research including children aged 7-18 and contextual factors.
Main Results:
- Current legal frameworks presume competence based on age, hindering nuanced understanding.
- Contextual factors like development, parental influence, information quality, and decision type impact competence.
- A lack of clear operationalization for children's consent competence is a primary barrier.
Conclusions:
- Empirical data is crucial to inform the discussion on children's consent competence.
- Future research should utilize standardized assessments covering understanding, reasoning, appreciation, and choice expression.
- Investigating children aged 7-18, improving information delivery, and assessing contextual data are key recommendations.
Background:
For decades, the discussion on children's competence to consent to medical issues has concentrated around normative concerns, with little progress in clinical practices. Decision-making competence is an important condition in the informed consent model. In pediatrics, clinicians need to strike a proper balance in order to both protect children's interests when they are not fully able to do so themselves and to respect their autonomy when they are. Children's competence to consent, however, is currently not assessed in a standardized way. Moreover, the correlation between competence to give informed consent and age in children has never been systematically investigated, nor do we know which factors exactly contribute to children's competence.This article aims at identifying these gaps in knowledge and suggests options for dealing with the obstacles in empirical research in order to advance policies and practices regarding children's medical decision-making competence.
Discussion:
Understanding children's competency is hampered by the law. Legislative regulations concerning competency are established on a strong presumption that persons older than a certain age are competent, whereas younger persons are not. Furthermore, a number of contextual factors are believed to be of influence on a child's decision-making competence: the developmental stage of children, the influence of parents and peers, the quality of information provision, life experience, the type of medical decision, and so on. Ostensibly, these diverse and extensive barriers hinder any form of advancement in this conflicted area. Addressing these obstacles encourages the discussion on children's competency, in which the most prominent question concerns the lack of a clear operationalization of children's competence to consent. Empirical data are needed to substantiate the discussion.
Summary:
The empirical approach offers an opportunity to give direction to the debate. Recommendations for future research include: studying a standardized assessment instrument covering all four relevant dimensions of competence (understanding, reasoning, appreciation, expressing a choice), including a study population of children covering the full age range of 7 to 18 years, improving information provision, and assessing relevant contextual data.
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