Review Paper

Informed Consent and Adolescents

Debbie Schachter, MD, FRCPC¹, Irwin Kleinman, MD, FRCPC², William Harvey, PhD, LLB³

Objective:To explore the doctrine of informed consent and the development of capacity in adolescents with psychiatric problems to help clinicians better reflect on the relevant ethical issues. Method: We discuss the relevant literature and explore the role of psychiatric impairment in adolescents’ ability to consent. Results: In common law, there is no minimum age at which individuals are able to consent to medical treatment and no age below which they are unable to consent. Adolescents’ right to self-determination is based on their ability to understand and appreciate the information relevant to the medical decision and on their ability to consent voluntarily and freely. There is a consensus in the literature that, around age 14 years, adolescents have the cognitive ability to understand information necessary for consent. However, there are limited empirical data regarding adolescents’ ability to appreciate the information and to make a voluntary decision. Conclusion: Clinicians need to involve adolescents in the consent process to the extent possible and assess the elements of capacity to consent to treatment on an individual case basis, recognizing that capacity may evolve as adolescents’ cognitive capacities and values mature. (Can J Psychiatry 2005;50:534–540) Click here for author affiliations.  Click here for information on funding and support Clinical Implications Adolescents should be involved in the consent process to the extent possible. Capacity to consent to treatment needs to be assessed on a case-by-case basis. Empirical research is needed to further our knowledge in this area. Limitations There are limited empirical data on adolescents’ capacity to consent. There is no gold standard for assessing competence. Standards for capacity assessments vary in clinical practice and empirical research. Key Words: informed consent, adolescents, capacity, competency Résumé : Le consentement éclairé et les adolescents

An individual’s right to determine his or her medical treatment is ethically and legally fundamental in the patient–physician relationship and reflects the underlying values of beneficence and respect for individuals’ autonomy (or self-determination) or well-being (1–3). The elements of a valid informed consent include that the individual has the capacity to consent, has received adequate disclosure of relevant treatment information, and has given consent voluntarily and freely (4).

The first element of informed consent relates to the individual’s capacity. “Capacity” (in legal terms) or “competence” (in ordinary language and bioethics) may be defined in terms of ability. To say that a person has the capacity or competence to do something is to say that he or she has the ability to do it. In this paper, the term capacity (or competence) will be used to refer to the ability to give a valid consent or refusal to medical treatment. Capacity is decision-specific; that is, it relates to the specific treatment being proposed to a patient in a specific situation under specific conditions. Capacity to consent to or refuse a particular treatment represents the ability to understand and to appreciate the information disclosed related to the proposed treatment.

Mental capacity or competence is a prerequisite to informed consent. There is no gold standard of competence (5). The concepts of capacity or competence are normative or evaluative. To say that a person has the capacity or competence to do something (for example, to make a choice or a decision) is to say that the individual has the ability to do it; that is, the person has met or surpassed a particular standard or test (6). Whatever the apparently empirical nature of the standards or tests of capacity, the assessor’s application of those empirical criteria to the relevant data (that is, patient responses to assessment questions) requires the assessor to make a normative judgment (for example, that the patient is either competent or incompetent) (7–9).

The content of these capacity standards varies among jurisdictions, just as the tests may vary among practitioners (5). The standards of capacity are typically stated to be the ability to understand information relevant to making a treatment decision and the ability to appreciate the reasonably foreseeable consequences of a decision or lack of decision (5). The ability to appreciate the reasonably foreseeable consequences involves patients’ insight, their awareness and understanding that they have an illness, and their ability to apply the information to their personal situation. For example, in the Regulations under the Substitute Decisions Act, Ontario 1992 (10), the Guidelines for Conducting Assessments of Capacity (10) analyze that standard of appreciation as a normative, and not only empirical, standard that has an affective element as well as an element of choice. Competent persons have the ability to realistically appraise the outcome of their choice and are able to justify that choice or decision. Thus the Guidelines are neither purely cognitive nor purely empirical.

The second element of informed consent requires that patients receive an adequate disclosure of information. The information disclosed should relate to the nature of the proposed treatment, the expected benefits, the material risks and side effects of treatment, the alternative courses of action that could reasonably be pursued, and the likely consequences of not having the treatment (4,11). The standard of disclosure is the information that a reasonable person in the patient’s specific situation would want to know to make an informed decision (12–14). The material benefits and risks of treatment (12,13) must be disclosed.

The final element of informed consent is that the consent be given voluntarily and free of force, coercion, or manipulation (15).

Although the informed consent process is sometimes described or conceptualized as a discrete event, it is actually a dynamic process occurring throughout the patient–physician relationship (4). It begins with initial information sharing and diagnosis and may be followed by further information gathering, information sharing, and shared decision making. Thus adolescents’ role in the consent process will likely evolve over time, with their evolving capacity.

A patient’s ethical and legal right to consent to or refuse suggested treatment is contingent on the patient’s capacity, competence, or ability to do so. An authoritative or valid choice by patients gives rise to correlative duties in third parties, such as physicians, to not interfere with that choice and to assist patients in securing their treatment goals. An authoritative or valid choice need not be correct according to the ethical and medical standards of a community or a health care profession (16). Competent patients have the right to decide what is in their best interests according to their own value system. Substitute decision makers, typically family members or other legally validated persons, are permitted to consent or refuse on a person’s behalf when that individual lacks the capacity to make an authoritative choice (4). Even when patients are incapable of giving a valid consent or refusal, they may have the ability to assent or dissent (17). Hence, such patients ought to be encouraged to participate in shared decision making, even if their wishes are not authoritative. Adolescents may, at times, be examples of such persons.

During adolescence, the period spanning age 13 to 19 years, there is a gradual development of values and, with maturity, an increasing ability to make self-defining or autonomous choices (18). Adolescents may differ from adults in their perceptions and attitudes toward risks and benefits and in their increased involvement in risk-taking behaviour (19). Adolescents may value risks and benefits differently from adults; for example, they may attach more value to the immediate rather than long-term consequences (19). There is debate about whether adolescents feel less vulnerable to risks than adults (20–22).

When are adolescents sufficiently mature to appreciate benefits and risks, their own potential vulnerability to risks, and their mortality to make authoritative medical decisions? There is debate about when adolescents develop sufficiently stable life goals and values against which to weigh information in the context of medical decision making and whether they are sufficiently mature and autonomous to consent to medical treatment (18,19,23). Protective policies toward adolescents are usually based on the presumption that adolescents differ from adults in their capacities for reasoning and appreciation, as well as in their choices, maturity, and behaviour (18,19).

Informed consent in psychiatry has been particularly important and challenging for several reasons. In psychiatry, a patient’s mental illness itself may intensify the physicians’ difficulty in weighing and balancing the values of patient autonomy and patient well-being that ground the informed consent process and the relationship with their patients (24). Patients with psychiatric illnesses may be viewed as more likely to choose badly, unwisely, or more harmfully than persons without mental illness, possibly giving rise to a physician’s paternalistic view that patients’ well-being is to be preferred to respecting their autonomy, as expressed through their choices.

For example, there were early concerns cited in the literature that adult patients who were treated with antipsychotic medication would discontinue treatment or relapse if informed about potential side effects (25). Empirical data suggest that patients with schizophrenia informed about tardive dyskinesia have not experienced an increased rate of relapse, medication discontinuation, or hospitalization (26). Further, while the understanding of information is reduced among schizophrenia patients with increased psychopathology, many schizophrenia patients achieve the same level of understanding as medically ill control subjects (27,28). In addition, there have been concerns about whether some patients with depression are competent to refuse treatment (29).

Thus the informed consent process with psychiatric patients challenges the caregiver to ensure that there are adequate measures to facilitate patient understanding and appreciation and thereby maximize patient autonomy and well-being. The goal is to respect and not interfere with patient decision making.

With respect to adolescents, the informed consent process further challenges physicians’ ability to balance the promotion of patient autonomy and patient well-being. When adults make decisions that appear to be poor choices, these choices may be understood to reflect the individual’s idiosyncratic view. However, when adolescents make decisions that may cause potential harm, additional concerns about capacity and maturity may be triggered. Although the outcome of a medical decision should not theoretically affect the determination of capacity (30), in practice it may, and it is likely to have a stronger impact when treating adolescents who may be thought, as a group, to lack the maturity of adults (19). Thus working with adolescents is likely to intensify the struggle within physicians between paternalism and patient self-determination. However, the informed consent process, as well as the patient–physician relationship generally, should assist adolescents in developing the capacity to make autonomous choices.

The issue of who has authoritative decision making typically becomes most clinically challenging when adolescents and their caregivers (for example, a parent, guardian, or trustee) disagree regarding treatment. The clinical challenge is twofold: it involves 1) determining whether the adolescent who is faced with a treatment decision in fact has the capacity to consent to or refuse the particular treatment decision and 2) working with the caregiver and adolescent in a manner that is respectful to all. There is the challenge of involving caregivers in treatment planning when the adolescent has the capacity to make clinical treatment decisions and the reciprocal challenge of involving the adolescent in the treatment decision to the extent possible when the adolescent lacks capacity. In the latter case, the adolescent may be said to be able to assent to or dissent from proposed treatment (17). However, those assents or dissents are not authoritative; that is, they do not ethically or legally bind physicians to accede to the patient’s specific wishes.

Adolescence is a period during which there is a developmental shift toward increasing freedom or independence from parents and families; the informed consent process, as well as the patient–physician relationship generally, should assist adolescents in developing the capacity to make autonomous choices. It is also during adolescence that the ability for abstract thinking becomes more fully developed.

Capacity in Adolescents: Empirical Studies

Factors in children that are said to be associated with understanding the information necessary for consent include age, intelligence, experience with illness, cognitive development, and linguistic background (31–36). Regarding age, there is an emerging consensus from a developmental perspective that adolescents aged 14 years and over can understand information necessary for valid consent (31–36). There are fewer data in the empirical literature.

Several studies examined adolescents’ understanding of information disclosed related to medical interventions and their reasoning process. In hypothetical treatment dilemmas, investigators examined the understanding of information and reasoning of subjects aged 9, 14, 18, and 21 years. The investigators found that the adolescents aged 14 years did not differ from adults (37). The authors were unclear whether the results of these hypothetical situations would apply to children with actual disorders.

In another study using hypothetical vignettes, adolescents aged 14 to 18 years with mental health difficulties resembled age-matched control subjects in their understanding of information, but they performed more poorly in reasoning, with verbal IQ correlating with understanding (38). Kaser-Boyd and others studied individuals aged 10 to 20 years with a range of emotional or learning difficulties and examined their understanding of the benefits and risks of individual problem-solving therapy after an information session (39). Most subjects identified at least one risk or benefit of therapy, with those having had therapy identifying more benefits and risks and those being referred for therapy identifying more benefits (39). Those aged over 14 years were more likely to believe that therapy might help them learn something, whereas those aged under 14 years were less knowledgeable regarding potential benefits of therapy.

Casimir and Billick found that intelligence correlated with knowledge of the legal aspects of hospitalization but not with more general knowledge about psychiatric hospitalization (40). In another study, Billick and others found that competency, as determined with a questionnaire, correlated significantly with both age and reading level among pediatric patients aged 5 to 18 years and that most subjects were defined as competent at age 12 years (41). However, in both studies, subjects did not receive a structured disclosure, and it is unclear whether all subjects were adequately informed.

The role of psychiatric illness on adolescents’ ability to understand information to consent to psychiatric medications prior to treatment has not been studied. A series of studies, however, have examined hospitalized children’s and adolescents’ knowledge about psychiatric medications after disclosure and after medication was initiated. Children had varied diagnoses and were taking various medications. Children’s knowledge correlated with verbal IQ but not with age (42). Children learned the name, dosage, target symptoms, and benign side effects but not the more serious side effects or treatment alternatives; those receiving a more intensive intervention had more knowledge (43). There was no significant difference between parents’ and adolescents’ knowledge (44). One difficulty in interpreting these findings is that patients’ knowledge was assessed after they received medication, which might have affected their knowledge. It is unclear what would have been known after disclosure alone (the situation patients are typically in), prior to commencing medication treatment. It is also unclear how to interpret the finding of no difference in knowledge between adolescents and parents, because there was no control parent or adolescent group.

Ambuel and Rappaport studied the reasoning of girls and women facing pregnancy decisions in groups aged under 15 years, 16 to 17 years, and 18 to 21 years (45). For those considering abortion, there was no difference between groups in terms of their reasoning about the pregnancy decision, suggesting similar levels of competence to justify choice. However, for those not considering abortion, the reasoning of girls aged under 15 years was less well developed than for those aged 16 to 17 years or those aged 18 to 21 years, suggesting that, for these adolescents, justification was less well developed than that of the older individuals.

Notwithstanding the limitations of the aforementioned studies, the literature does seem to support the consensus that adolescents’ understanding of information after they have received treatment is similar to parents’ understanding in the same circumstances; that is, it is similar to the understanding of a typical surrogate decision maker where adolescents lack capacity. Adolescents with mental health difficulties seem to have understanding similar to control subjects. Intelligence correlates with adolescents’ understanding, similar to what is observed in adults (46).

The data with respect to reasoning, which is one dimension of appreciation, are less conclusive. There have been fewer studies focusing solely on appreciation, the second element of capacity. Appreciation involves the realistic appraisal of the decision outcome and the justification of the particular choice. In the absence of operational guidelines for evaluating the appreciation element of capacity, the assessor must make a subjective value judgment as to whether a threshold has been reached in terms of appreciation. Thus, insofar as the determination of appreciation is a normative or evaluative process and contains an affective element, its determination is even more difficult than the assessment of understanding.

Children’s development occurs not only in terms of cognition but also in terms of affect (or emotion) and values. Adolescents’ ability for abstract thinking, foreseeing consequences of their treatment choices, and appreciating their illness and its course with or without treatment likely evolves during adolescence. Achieving the necessary maturity to appreciate treatment decisions is a process that likely takes place over time. In particular, it is unclear how well adolescents with psychiatric problems appreciate their disorder and treatment recommendations and whether this situation is unique to adolescents or applies to adults as well.

Disclosure of Relevant Information to Adolescents

There are no empirical studies examining different disclosure formats for valid disclosure to adolescents. To facilitate and potentially maximize adolescents’ capacity and evolving capacity, it is recommended that the information disclosed be presented in a way that facilitates their understanding. Reading material, if provided, should be suitable to adolescents’ reading achievement. For adult reading material, a reading level of Grade 5 to 6 is recommended (47). For adolescents, we recommend a similar level.

The manner in which information is shared with adolescents requires consideration. Information can be transmitted with various media, including written material (pamphlets or books), orally presented material, or audio-visual media such as television or videotapes (48). Information handouts are more effective when discussed with a professional than when read independently (48). While various methods can, and likely should, be used to ensure optimal understanding, clinicians will need to assess whether the information is understood and appreciated.

Voluntary Nature of Consent During Adolescence. For consent to be valid or authoritative, it must be given voluntarily and free of coercion (15). For both adults and adolescents, obstacles to voluntary consent can come from health care professionals or important persons in patients’ social environments (4). Clearly, physicians should not coerce patients in any way with respect to treatment decisions. Treating professionals should not retaliate against or threaten to withdraw treatment from a patient who does not follow their recommendation. How one assesses the impact of threats from family members, teachers, or colleagues on an adolescent’s decision making is particularly important for adolescents. Grisso and Appelbaum suggested that threats that arise from outside the treatment team, such as when people make demands on patients as conditions for involvement in ongoing relationships, should not invalidate the voluntary nature of consent (4). However, adolescents are usually more dependent on parents’ for their well-being than are independent adults and, therefore, would be potentially more unable to make independent decisions when threatened by family members. However, this is a conjecture and needs to be more fully examined within clinical situations.

Roberts claims that the ability to make voluntary decisions develops throughout adolescence (49). It has also been suggested that adolescents may have a greater tendency to conform than adults; thus younger adolescents may not be truly able to provide voluntary consent. However, adolescent youth with oppositional traits and disruptive behaviour disorders might be hypothesized to have a greater tendency to oppose adults’ recommendations. This determination would have to be made on a case-by-case basis.

There have been 2 empirical studies of voluntary medical decision making with hypothetical vignettes displaying varying degrees of parental influence. Scherer and Reppucci found that the decisions of adolescents’ aged 14 to 15 years were influenced by parental input (50). The impact of parental influence on decision making was reduced for the more serious vignettes. In a subsequent study, Scherer compared adolescents aged 14 to 15 years with children aged 9 to 10 years and with young adults aged 21 to 25 years under conditions of varying parental influence (51). Differences emerged across age groups and according to the severity of the medical vignette. For the serious medical vignette (that is, a kidney donation), both adults and adolescents were more likely to maintain their conviction in the face of parental influence than were children. There was a trend for young adults to maintain their original decision, compared with adolescents, but this did not reach conventional levels of statistical significance. Adolescents, however, were more likely to maintain their original decisions than were children. For the less serious vignettes, such as those dealing with tonsillitis or wart removal, all groups were as likely to change their decisions in the face of increased parental influence.

In Ambuel’s study of girls and women facing pregnancy decisions, the ability to make a voluntary decision was compared among those aged under 15 years, 16 to 17 years, and 18 to 21 years (45). For those considering having an abortion, there was no difference in voluntary decision making among groups. However, for those not considering undergoing an abortion, girls aged under 15 years had less voluntary decision-making ability than those aged 16 to 17 years or those aged 18 to 21 years.

Consent in Canada

In Canada, the age at which the law recognizes a child to be capable of making valid health care choices varies across the provinces and territories (11,52,53). In common law, there is no specific age at which individuals are capable of consenting to or refusing treatment and no specific age below which they are unable to give a valid consent or refusal (54). The child’s right to consent depends on decision-making capacity (55). In some provinces, the common law of consent is codified; in other provinces, an age of consent is stipulated in legislation (56,57). In most jurisdictions, laws relating to consent can be found in several statutes, and there might be complex relations among them (11). Child welfare legislation may be of particular concern when a mature minor refuses medically necessary and life-saving treatment (11,18,53). Clinicians are advised to be familiar with the relevant statutes and common law decisions in their jurisdiction (11). This complexity of the law related to an adolescent’s capacity to make health care decisions reflects the tension between society’s recognition of the growing autonomy of adolescents’ and its interest in protecting adolescents from making decisions they may later regret (18,19).

Conclusion

Evaluation of the informed consent process, with respect to adolescent patients, remains complex, and determining capacity in adolescents is particularly difficult (19), at least partly because adolescence is a period of developing maturity, values, cognition, and autonomy. There is a consensus in the literature that adolescents aged 14 years and over have the capacity to understand information relevant to medical decision making. However, there is debate about their ability to appreciate information required to make an authoritative choice and a voluntary and mature decision.

With adolescents, one challenge is to involve them in the informed consent process to the extent possible and to secure and maintain respect for both adolescents and caregivers. Clinicians need to recognize that adolescents’ capacity to consent or refuse medical treatment is evolving, and an assessment of an adolescent’s capacity must be made on an individual basis, with close regard to the specificities of the patient’s situation. Finally, there are many unanswered questions regarding the capacity of adolescents with mental health difficulties to consent. Empirical research is needed to better understand the development of capacity in adolescents with and without psychiatric problems. This paper explored adolescents’ participation in the informed consent process, with the goal of helping clinicians to better reflect on the relevant ethical and empirical issues.

Funding and Support

We acknowledge the support of the Canadian Institutes of Health Research (grant 64471). A portion of this paper was presented at the Ontario Psychiatric Association conference, 2004 Jan; Toronto (ON).

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Author(s)

Manuscript received March 2004, revised, and accepted April 2005.

1. Psychiatrist, Child, Youth and Family Program, Centre for Addiction and Mental Health, Toronto, Ontario; Assistant Professor, Department of Psychiatry and Public Health Sciences, University of Toronto, Toronto, Ontario.

2. Psychiatrist, Mount Sinai Hospital and Centre for Addiction and Mental Health, Toronto, Ontario; Assistant Professor, Department of Psychiatry and Family and Community Medicine, University of Toronto Joint Centre for Bioethics, Toronto, Ontario.

3. Professor Emeritus, Department of Philosophy, Victoria University in the University of Toronto, Joint Centre for Bioethics, Toronto, Ontario.

Address for correspondence: Dr D Schachter, 250 College Street, Toronto, ON M5T 1R8

e-mail: Debbie_Schachter@camh.net

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