Mary Ann McCabe, PhD
Over the past few decades, we have witnessed a growing appreciation on the part of family courts and health care systems that children and adolescents might play larger roles in decisions affecting their own welfare. Fortunately, at the same time, we have witnessed a growing body of developmental and clinical knowledge in psychology regarding the involvement of children and adolescents in decisions, including a range of empirical studies into children’s capacities to make competent decisions in various contexts. More recently this understanding is being augmented by neuroscience research regarding adolescent brain development and decision-making, which will have far-reaching policy implications (Dahl & Spear, 2004).
This article provides a developmental and clinical framework for determining an appropriate level of involvement for children and adolescents in mental health and medical care, as well as a range of suggested readings both for greater depth and for specific studies. Children’s involvement in decisions in three areas - in research, in reproductive health, and in juvenile justice contexts – has unique aspects that are outside the scope of this article.
The area of family law oversees the process of balancing (1) the best interests and rights of children/adolescents, (2) the best interests and rights of the family (e.g., parental discretion), and (3) the interests of the state (e.g., healthy growth of young citizens). The standard of parental consent is based on the assumption that parents often have the same interests as their children, and/or will always act in the best interests of the child. There are, of course, situations where parents clearly do not act in the child’s best interests (e.g., abuse, neglect) and parental rights are challenged. There are other circumstances where there is a clear conflict of interests between parents and children (e.g., organ donation for a sibling, religious objections to medical treatment), which lead to exceptions to the standard of parental consent.
The legal age of adulthood (18 years) is the historical construct based on considerations such as military service, and predated modern developmental science. In more recent years, family courts increasingly recognize that neither rights nor capacities appear on the 18th birthday. Some judges appreciate that developmental and behavioral/social science may be able to shed light on what developmental capacities are necessary for different types of autonomy and accountability for minors.
The legal construct of a mature minor has been introduced in some medical contexts where minors are thought to deserve greater rights to self-determination. These are generally less serious treatment situations that are clearly of direct benefit. While not precisely defined, a mature minor is generally at least in mid-adolescence, and of sufficient intelligence to understand and appreciate the consequences of the proposed treatment for him/herself (Schmidt & Reppucci, 2002). State laws commonly allow mature minors to seek treatment without parental consent for sensitive conditions, such as pregnancy, contraception, sexually transmitted diseases, substance abuse, and mental health.
Despite authorizing minors to seek care for certain conditions, there are not always safeguards to insure their privacy or payment for such care. In the absence of means to pay for treatment, medical and mental health care may be billed to parents’ insurance, or parents may inadvertently obtain access to medical records. Further, state laws sometimes allow minors to seek care for a condition, but there may also be seemingly discordant laws that require parental notification. As one example, there is increasing controversy, and recent legal changes, wherein adolescents are afforded the right to seek abortion but parental notification is required. Parental notification laws are usually intended for situations where complications of treatment are anticipated; thus, failure to inform the parent/guardian would seriously jeopardize the safety and health of a minor, and/or informing the parent/ guardian would benefit the minor’s physical and mental health and family harmony.
There is marked variability in minors’ rights to seek health care across states. Readers are encouraged to refer to English & Kenney (2003) for a compendium of state laws. It is particularly important for psychologists to understand state laws governing minors’ access to mental health care and their rights to privacy in terms of their mental health records, especially when they practice in multiple jurisdictions.
In considering children’s and adolescents’ capacities to be involved in decisions regarding their own health care, it is helpful to begin with the legal requirements for informed consent, which include that the choice is: (1) knowledgeable and informed, i.e., the person demonstrates factual understanding about risks and benefits of alternative treatments; (2) voluntary, or free from coercion; and (3) competent (Lidz et al., 1984). There are varying standards for a competent choice, including: (a) evidence of any choice; (b) a reasonable choice; (c) evidence of a reasonable decision-making process; and - the highest standard - (d) appreciation of the factual information, or abstract understanding (Roth, Meisel and Lidz, 1977).
In general, the word competence is a psychological construct, composed of cognitive factors (understanding, reasoning) and social factors. Competence is situation specific; immaturity in one area does not imply immaturity in other areas (e.g., Melton, Koocher & Saks, 1983.) Competence - on the part of either an adult or minor - is most likely to be questioned when a patient makes a socially unacceptable choice, or one that differs from prevailing professional opinion.
The personal values of a health professional will never be totally separate from his/her judgments about what is in the best interests of a child, and the child’s competence to participate in treatment decisions (McCabe et al., 1996). Psychologists who need to determine an appropriate level of involvement for a child or adolescent in a treatment decision might therefore ask themselves the following types of questions:
1. What decisions would you not feel comfortable allowing a minor to participate in making? Why?
2. Do parents have the right to refuse certain treatment on behalf of their minor children? If so, which ones?
3. Do minors have the right to refuse certain treatments? If so, which ones?
4. Are there treatments that you feel require more active involvement from minors in decision-making over other treatments?
Goals for Involving Children and Adolescents in Treatment Decisions
The best treatment decision for a given patient is based both on factual, technical information and the interpretation of this information within the context of purely subjective factors and values (Mc-Cabe, 1996). Therefore, the fundamental goal for involving children and adolescents in medical and mental health treatment decisions is to extend the ethical principle of respecting a person’s right to self-determination and autonomy for treatment decisions when it is appropriate to do so. However, research in pediatric and health psychology suggests that there may be additional goals for involvement in treatment decisions as well. Specifically, involving children and adolescents at an appropriate level in decision making may: improve their treatment alliance and cooperation with treatment; improve clinician-parent-child communication; increase realistic expectations of treatment; and, in respecting children’s capacities, provide opportunities for development (see McCabe, 1996).
In terms of fostering development, it is possible that an appropriate level of involvement in decision-making may provide children with an opportunity to learn responsibility safely. It may also enhance their sense of control, self-efficacy, and/or self-respect. Particularly in the area of mental health treatment, when we underestimate children’s capacity for participation in decisions, we may undermine their utilization of their own resources and their motivation for self-help. Conversely, anxiety may result if the level of participation in decision-making is too high, or if a decision is too complex. Certainly, children and adolescents deserve to be protected from a level of involvement in decision-making that exceeds their capacities, or from decision-making contexts that are too difficult (e.g., difference of opinion between parents).
Levels of Involvement in Treatment Decision-Making
Children’s degree of involvement in treatment decision-making should be viewed along a continuum, including three rather distinct levels: (1) information about the nature of their difficulties/symptoms and the projected course of treatment; (2) shared decision-making with parents/guardians, including goal-setting in treatment; and (3) autonomous decision-making, which can include the decision to defer to others. Psychologists are regularly required to determine the appropriate level of involvement in treatment decisions for children with whom they work, and they are also commonly called upon to consult regarding an appropriate level of involvement for an individual child or adolescent for other types of treatment. In these situations, a psychologist may be uniquely trained to appreciate developmental, clinical, and family issues, to facilitate clinician-parent-child communication, and to make individualized recommendations accordingly. The following model for determining an appropriate level of involvement for individual children has been previously published (McCabe, 1996).
The first broad area of consideration for determining children’s level of involvement should be developmental factors, in terms of both cognitive and social development. Children’s level of cognitive development, including intellectual impairment, determines their capacity for (1) factual understanding of both their condition and treatment, and (2) reasoning. For medical treatments, children need to understand simple facts about bodily functioning, the illness process, and medical procedures. For mental health treatments, children need to understand psychological/behavioral constructs - decidedly more abstract. In all cases, children need to be able to understand that treatment can reverse a condition. Abstract reasoning is required for the highest standard of competence to consent, i.e., appreciation of the factual information presented. This may involve: weighing more than one factor; understanding information outside experience, or weighing hypothetical possibilities; taking a future time perspective; understanding other’s opinions and perspectives; conducting inductive and deductive reasoning; prioritizing, and problem- solving with abstract steps; and employing a flexible focus of concentration. The empirical literature on treatment-decision-making and risk-taking has suggested that by mid-adolescence, individuals are usually better able to engage in abstract reasoning, as well as utilize the probability of consequences and seek additional information when necessary. What remains understudied in research is the degree to which experience with a condition or treatment may influence developmental understanding and reasoning, and therefore decision-making.
Aspects of children’s social development determine their capacity for voluntariness in decision-making and may influence their reasoning as well. Children’s relational style with authority, or the degree to which they feel obliged to conform or not conform, is particularly important. There are also other dimensions along which children may develop stable styles into adulthood that impact their level of autonomy (e.g., sense of personal control, freedom from social desirability). Phases in social development may impact decision-making. For example, the process of identity development during adolescence may lead to instability in values, and therefore instability in their choices. Developmental concerns during middle childhood and adolescence (e.g., peer acceptance, physical appearance) can interact with aspects of treatment to constrain children’s focus in decision-making. Finally, children’s prior experience with taking responsibility for decision-making in various contexts, particularly regarding their health, will, in part, determine their preferences and capacity for involvement in treatment decisions.
The second area of consideration for determining children’s level of involvement is clinical factors. Among clinical issues to consider are a child’s emotional state (level of anxiety or depression, or a particular mental health diagnosis), physical state (e.g., pain, attention span), health beliefs (including beliefs about how to interact with health care providers), and style of coping with information (including preference for degrees of detail in information about medical information). Individual children’s preferences for level of involvement, and their prior experience, are also relevant here. Other clinical factors pertain to the family, including cultural background and religious affiliation (including beliefs about the role of parents, children in certain contexts), family structure and roles, and parents’ preferences regarding children’s level of involvement.
The final area for consideration is situation factors, again drawing on both social and cognitive psychology. There are features inherent in decisions that determine their level of complexity or degree of difficulty. For example, choosing between a positive and negative alternative is far simpler than choosing between two negative alternatives. Weighing long-term consequences against immediate consequences can be difficult for children and adolescents. The degree of uncertainty involved in a decision can determine how abstract, and therefore difficult, the choice is. Situations of high uncertainty are usually difficult even for adults. In short, if a treatment decision is too difficult, or the consequences of the decision are only negative, then decision-making may create anxiety in and of itself.
The level of stress in a decision-making situation provides additional context to consider. Time constraints on both communication of information and decision-making can impact both understanding and reasoning. Differences of opinion, between parents, among family members, or between family and providers, can make decision-making situations far more burdensome for children and adolescents. It is always helpful to protect children from serving a tie-breaker role in treatment decisions. It is also always helpful to respect both the child/adolescent patient’s right to self-determination, and the integrity of his/her family. Psychologists should work toward reconciliation among patient, parent, and provider opinions (McCabe et al., 1996).
Issues Regarding Involvement that are Unique to Mental Health Treatment Decisions
Both ethical guidelines and legal regulations encourage informed consent for mental health treatment, and children and adolescents should be afforded an appropriate level of involvement. Further, managed mental health care plans often specify details regarding length of treatment and potential limits upon confidentiality that may need to be understood by treatment participants. There are several issues in mental health treatment that make it a unique decision-making context for children and adolescents.
First, interest in self-help is central to most mental health care. It is widely understood that one’s own desire to experience less distress, and to seek help, may make change more likely to happen. However, in the case of children and adolescents, the decision for mental health treatment often grows out of a consensus among adults. It is not uncommon for the best interests of family members to diverge in terms of the decision to initiate treatment, the focus of treatment, treatment goals, or treatment modality.
Nonetheless, there are benefits to involving children and adolescents in decision-making about their own mental health treatment to the highest degree that they are capable. At the very least, it is important to provide them with age-appropriate information regarding the nature of their condition(s), the purpose and projected course of treatment (including time commitment), limits to confidentiality, and - in some cases - the risks and benefits of alternatives, including no treatment. Depending on the empirical base, the most commonly used medications in psychopharmacology allow for simple discussions of risks and benefits.
There are considerably more abstract concepts, or ambiguity, associated with psychotherapy. In general, brief, structured therapies, particularly empirically supported treatments, more readily lend themselves to collaborative discussions of problems, goals, and mechanism of change. Psychodynamic therapies do not lend themselves as easily to collaborative discussions, and some therapists may have concerns about interrupting the development of transference. It is important to note that resistance to change is a frequent phenomenon in mental health treatment, and is not the same as dissent to treatment.
There is developmental literature related to children and adolescents’ participation in psychotherapy that is clearly also relevant to their capacities to participate in treatment decision-making. For example, Koocher (1983) has identified a number of developmental capacities that underlie active participation in verbal psychotherapy, including the ability to: conceptualize one’s behavior as changeable; reflect on feelings; conceptualize motivations, ambivalence, and achieve insight; consider long-term consequences of behavior; take others’ perspectives, and understand their motivations’; understand mechanisms for therapeutic change; conceptualize emotional and behavioral disturbances, and their causes; and attend to, and conceptualize, salient issues as they arise. For higher levels of participation in decision-making regarding mental health treatment, it is clearly also necessary to understand the impact of diagnosis, record-keeping, and confidentiality and its limits. Similarly, in an edited volume by Shirk (1988) various scholars have described the aspects of cognitive, emotional and social development that influence psychotherapy, including: causal reasoning, or comprehension of therapeutic interpretations; emotional understanding; self-understanding; and conceptions of social relationships. Most of these developmental trajectories are relevant to all the theoretical approaches to mental health treatment with children, including cognitive-behavioral approaches.
Both ethical and legal frameworks encourage involving children and adolescents in treatment decision-making for medical and mental health care to the fullest extent possible. This article has reviewed a framework for determining the appropriate level of involvement for a particular child or adolescent. Very briefly, it is important to consider developmental issues, clinical issues, and factors related to the decision context itself. It is also helpful for psychologists to explore their own values regarding children’s best interests and their capacity for participation in various types of decisions. In general, it is important to be mindful of both minors and their parents’ preferences regarding their level of involvement, and work to reconcile these views when possible. Involving children and adolescents in treatment decisions, particularly education about the nature of their condition and treatment alternatives, is perhaps most important for those with chronic conditions requiring long-term self-management and adaptation. Finally, since neither development nor clinical factors are static, clinicians should re-evaluate the appropriate level of involvement whenever new treatment junctures and decisions arise.
Material in this article has previously appeared in the Journal of Pediatric Psychology and Journal of Adolescent Health.
Mary Ann McCabe, Ph.D., is Director of the Office for Policy and Communications, Society for Research in Child Development, and Associate Clinical Professor of Pediatrics, George Washington University School of Medicine. Prior to assuming her position with SRCD, Dr. McCabe was the Director of Health Psychology and Director of Training in Psychology at Children’s National Medical Center. Her areas of research and writing have focused in neuropsychological and behavioral sequelae of medical treatments in children, as well as minors’ capacity for involvement in decision-making about medical and mental health treatment and research. She maintains a clinical practice in Arlington, Virginia. Dr. McCabe has been credentialed as a National Register Health Service Provider in Psychology since 1998.
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Relevant Empirical Studies
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