Book Review: Adolescents,Autonomy and Medical Treatment: Divergence and Convergence Across the Globe

Adolescent development and the law

Adolescents are neither overgrown children nor miniature adults. They occupy a developmental space of their own that stands between childhood and adulthood: an exciting, awkward, challenging, sometimes infuriating (to their elders), always important phase of life. The developmental stage of adolescence is characterized by many contradictions. Adolescents are both vulnerable—Feuillet-Liger refers to “the fragility of adolescence” ⁴ —and increasingly mature. They seek emancipation and separation from family but often remain financially and emotionally dependent. In the medical arena, these tensions mean there is a need for both protection and autonomy.

To a significant degree, the law is mismatched with the social development of adolescents, as this book clearly illustrates. Even the term “adolescent” with its associated meaning and significance almost never appears, as such, in the law. Instead, at least historically, the law often applies specific age distinctions and thresholds—the age of majority, the age of consent, and the age of criminal responsibility—that may be ill suited to the nuanced decision scheme that could more effectively incorporate the individual variations inevitably associated with adolescent development. There is, however, what appears to be a growing trend for the law to incorporate more flexible, individually applicable, standards such as “discernment” or “intellectual and emotional capacity to understand the extent of treatment” in lieu of the rigid age thresholds heretofore so common, as this book documents. International law, including certain key treaties and conventions, has played an important role in this evolving relationship between the law and adolescent development. In particular, the International Convention on the Rights of the Child provides “State Parties shall assure to the child who is capable of forming his or her own views the right to express those views freely in all matters affecting the child, the views of the child being given due weight in accordance with the age and maturity of the child.” ⁵

Autonomy

The central question explored in the book is a fundamental one: Who may or must give consent when an adolescent receives medical treatment or participates in a research study? Answering this question requires consideration of the extent to which adolescent autonomy is, or is not, recognized in law. Varied models of consent exist in the laws of the jurisdictions discussed in the various chapters. These include, for example, a near-absolute requirement of parental consent ⁶ ; the necessity for joint consent of both the parent and the adolescent, at least when the treatment is for serious illness or life is at risk ⁷ ; and recognition that some adolescent minors have capacity to give consent for themselves. ⁸ The application of these different models varies across a range of approaches from “total incapacity” to “medical majority.” In the former, the adolescent’s consent is never sufficient as long as she or he is a minor and the parent’s (or a surrogate’s) consent is always required; in the latter, the minor who has sufficient capacity is treated comparably to an adult and allowed to make his or her own medical decisions. Between these two extremes is a more flexible, albeit more subjective, approach based on “discernment.”

Historically, the standard legal regime with respect to consent for health care of minor children, including adolescents who are legally minors, is one in which parental consent is the dominant or even exclusive mode. In all but one of the countries studied in this book, the age of majority is 18 years; in Japan it is 20. The consent of parents, who are considered the legal representatives of their children, is necessary for a minor child to receive health care or participate in a research study. Thus, below the age of majority, adolescent minors do not consent for medical treatment, their parents do. This status is described in the book as “total incapacity.”

Few of the studied countries continue to maintain a strict regime of total incapacity for minor adolescents. Most are moving toward a more flexible standard that incorporates recognition of some capacity on the part of adolescents to make, or at least participate in, their own medical decisions. In doing so, the laws in many of these jurisdictions reveal the influence of international law, including the International Convention on the Rights of the Child. The degree of adolescent autonomy given legal imprimatur varies not only among, but also within, countries—adolescent capacity may be recognized in some realms of medical care and research but not in others, or in the older adolescent years, but not the younger. For example, in several countries parental consent is required for medical treatment of an adolescent under the age of 16, but an adolescent aged 16 or 17 with the capacity for discernment may consent to or even, with some limits, refuse care. ⁹ Consent based on discernment, or “partial capacity,” may be recognized for all medical care or only for more limited categories, such as “everyday” or ordinary care, ¹⁰ or for specific services such as family planning. ¹¹

Different jurisdictions incorporate the evolving discernment standard into their legal frameworks in different ways. Some countries have enacted a public health code that provides for partial capacity for minors. ¹² Some address the issue in a patients’ rights law. ¹³ In others, recognition of discernment is established as an imperative via a code of medical ethics. ¹⁴ This ethical imperative may be to allow the minor to give consent or may be to “listen” to the minor’s views, consistent with the International Convention on the Rights of the Child. In some countries, the capacity for discernment is presumed as the minor approaches the age of majority and is viewed as transcending parental power and establishing a personal right to consent. ¹⁵ In one of the legal regimes most deferential to adolescent autonomy, a minor may consent for “necessary” medical care beginning at age 14. ¹⁶ The extent to which the right of a minor to consent to treatment is accompanied by a right to refuse also varies among different countries, with the right to refuse sometimes corresponding to the right to consent, ¹⁷ but more often being more limited. ¹⁸

The legal regimes that prevail with respect to adolescent autonomy and consent for medical care have considerable significance for the medical practitioners who treat adolescents. Both the “total incapacity” standard and the “medical majority” standard are, in some sense, the simplest for a clinician to implement; in the first instance by deferring to parental authority, before recognizing the authority of the adolescent. The “discernment” standard requires more complex assessment by the clinician and a determination of the minor’s intellectual and emotional capacity to understand the nature of the treatment and its risks and benefits. This approach places a greater burden of responsibility on the medical practitioner but offers the benefit of legal flexibility to respond to the individual adolescent’s specific status, capacity, and needs.

Privacy

One of the key elements that determine whether or not adolescents seek and receive the health care they need is the protection of their privacy through the availability of confidential services. Findings from decades of research, especially in the United States but also elsewhere, have documented myriad ways in which adolescents’ access to health care is limited when confidential care is not available. ¹⁹ Privacy concerns lead adolescents to forego care entirely, choose a different provider or site, eschew certain services, or limit the information they share with their health care practitioner. ²⁰ Indeed, confidentiality has been established as an essential component of autonomy. If adolescents cannot receive services on a confidential basis, their right to consent may be less meaningful to them and their autonomy is limited by the extent to which their private information may be shared with others, including their parents. Protecting privacy is an important component of showing respect to adolescents. Nonetheless, it must be achieved in a manner consistent with their vulnerability and need for protection, similar to the balance that is required in granting the right to consent in the first place. This may occur through disclosures required, legally or ethically, when adolescents are at serious risk for harming themselves or others or when the medical care in question carries a particularly high level of risk.

Although confidentiality protections are not the primary focus of the analyses in Adolescents, Autonomy and Medical Treatment, many of the chapters do address the subject, albeit in a more limited way than their treatment of consent. Privacy and confidentiality protections vary from one country to another. In a few, there are explicit laws requiring that whenever a minor is allowed to consent for care, confidentiality protections will attach. ²¹ The correspondence between confidentiality and consent is not always complete, however, and gaps between them can affect adolescents’ access to care.

In many ways, the issue of confidentiality is more complex than consent, or at least the implementation of legal protections of confidentiality is more complicated than compliance with consent laws. The reason for this is the increasing complexity of medical records systems, payment methodologies, and electronic communications. For example, as medical records are increasingly maintained electronically rather than in paper files, the potential for breaches of confidentiality grows unless strict controls over the access to, and dissemination of, the electronic information are in place and enforced. Similarly, depending on how the medical treatment of an adolescent is paid for, communications between health-care providers and payers—parents, government agencies, or insurers—may compromise privacy. Also, because they are in the vanguard of digital media use, adolescents themselves may unwittingly disclose their own confidential medical information through their use of electronic forms of communication such as e-mail, text messaging, and social media.

Financial responsibility

The question of who is responsible for payment when adolescents receive medical treatment is another important determinant of their autonomy. Unless care is free at the point of use, or there is a source of payment that covers confidential services for which they have given consent, autonomy is significantly limited. When services are publicly funded and available without charge to the patient, this is not an issue. However, when the patient is responsible for all or part of the cost of the care, an adolescent may not be able to receive care independently. All but the most basic services are likely to be more expensive than adolescents can afford.

The countries studied in Adolescents, Autonomy and Medical Treatment vary significantly in this respect, although the specifics are not discussed in the book. In some countries, such as the United Kingdom, a national health plan covers the cost of most or all care adolescents may need. In others, like the United States, a system of public funding, private insurance, and patient responsibility comprises a financing patchwork. In others, patients or their families may bear most of the cost. Although financial responsibility and payment are not discussed in detail in the book’s chapters, significant examples are provided for some countries. In one, adolescents themselves are able to receive the benefits of insurance coverage from age 15. ²² In others, certain services such as family planning are available free of charge. ²³ Additional details about the payment systems in place in each country would help to complete the picture of how adolescents’ autonomy can be effectuated in a comprehensive way.