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Health Care Ethics USA Is It Ethical to Legislate an Age of Consent for Health Care Decision Making? U.S. Supreme Court Justice William O. Douglas remarked in 1972, that "the moral and intellectual maturity of a fourteen-year-old approaches that of an adult." Seven years later, Chief Justice Warren Burger countered with the comment that "most children, even in adolescence, simply are not able to make sound judgments concerning many decisions, including their need for medical care or treatment." These disparate statements reflect the conflict that law makers in our society face in regard to granting minors the legal authority to make their own health care decisions. We have chosen to legislate an age for such decision making, until which time parents generally decide for their children. That has hardly laid the question to rest, though, and we do make exceptions. For example, in regard to contraception, sexually transmitted infections, mental illness, and alcohol and other drug abuse, most states have laws that allow minors to consent to treatment without their parents' knowledge or consent. Society even goes so far as to fund these services in order to eliminate any financial need for parental notification. Such exceptions, however, do not reflect a belief that these young people are particularly well-suited to make such decisions. (Indeed, the opposite would generally appear to be so.) Instead, they result from concern that access to such treatment must be unimpaired, not only for the sake of the minors involved, but for the sake of the common good – the welfare of society as a whole. Justification for this concern is illustrated in a recent issue of the Journal of the American Medical Association, which reports on a study in which fifty-nine percent of teenage girls surveyed indicated that if parental notification were required, they would not only not seek testing or treatment for HIV and other sexually transmitted infections, but would also not stop being sexually active.1 In essence, if they could not give consent for confidential treatment, they would become public health hazards. States also acknowledge that minors who are married, are parents, or are on active military duty, may give consent for their own health care, and often for that of their spouse and children. Again, though, these exceptions are based on specific circumstances, and not on any evaluation of the decision-making capacity of the minor involved, nor even of what is in his or her best interest. This essay will not further consider any of these exceptions. Nor will it explore the issue of mature minors and the related questions of whether, and to what extent, minors should be allowed to at least participate in decisions regarding their health care. It focuses instead on the majority of minors in the majority of circumstances, asking if it is ethical and reasonable to legislate health care decision-making rights solely on the basis of age, and if so, if eighteen is a sound age at which to lift such restrictions. Principles These questions are rooted in the bioethical principles of autonomy and beneficence. 'Autonomy', as used here, refers to what Beauchamp and Childress describe as "the personal rule of self that is free from controlling interferences by others, and from personal limitations that prevent meaningful choice, such as inadequate understanding."2 Ronald Dworkin offers an expansion of this that is critically important for our discussion of minors, when he argues that the value of autonomy is derived "from the capacity it protects: the capacity to express one's own character – values, commitments, convictions, and critical as well as experiential interest," in his or her own life.3 The second principle, beneficence, requires that we act in the interest of the well-being of others. While there is much discussion about questions of to whom and to what extent we are required to be beneficent, we can limit our discussion here to looking at beneficence in the specific relationships of parent and child, and physician and patient. It is the responsibility of health care professionals to balance autonomy and beneficence in caring for all patients – that is, to balance the patient's right to self-determination versus what could objectively be considered to be in his or her best interest. There is broad acknowledgment, in both medicine and law, that autonomous decisions of competent adults will hold sway, regardless of what others might feel would be more in their best interest. Unless and until proven otherwise, a competent adult is presumed under law to hold sufficient decision-making capacity to decide autonomously to accept treatment, or to refuse or withdraw it, even if it leads to his or her death. Some adults, of course, are found not to be legally competent. That is, they are judged not to have the actual capacity to make reasoned decisions. Some of these persons, those with serious mental limitations, for example, may never have been competent, and when their thoughts have never been expressed, beneficence will come into play. Surrogates will make decisions for them by asking, "What is in the best interest of this person? What would the reasonable person want in these circumstances?" Other incompetent adults were once competent, but have become unable to make reasoned decisions through injury or illness. When this occurs, surrogates often base their decisions on the autonomy-based standard of substituted judgment. According to this approach, the surrogate considers expressions of preference that the person made in the past, and uses them to determine what he or she would now choose. In other words, "What would this person want in these circumstances, if still able to decide for him or herself?" Surrogate decision makers might also employ aspects of both these standards, focusing on what is ultimately in the best interest of the patient, but also taking into account the thoughts and values that the person may have expressed while competent. But what of minors? As noted above, persons are generally considered 'incompetent' under law to make health care decisions until they are eighteen years of age. Yet we all know that there is nothing magical about a birthday. We don't awaken on that day, suddenly more capable of sound decision making than we were the evening before. In reality, we each grow toward decision-making capacity at our own pace; often two steps forward one step back, as we make our way through childhood and adolescence. Minors should thus be classified not as 'incompetent', but as 'not-yet-competent', and this brings us back to the thesis questions of this essay: Is it ethical to legally restrict health care decision-making rights on the basis of age alone, and if so, is it reasonable to maintain eighteen as the age at which such restrictions are lifted? Discussion The first challenge in answering these queries is to determine whether most young people under the age of eighteen even possess sufficient cognitive ability to make rational decisions, for a lack of such capacity would render further inquiry moot. A survey of empirical studies, however, shows consistent conclusions that there are few demonstrated cognitive decision-making differences between minors over the age of thirteen and adults, and that even nine-year-olds can make some reasonable choices regarding health care treatment. These studies do not support the denial of the right of health care self-determination solely on the basis of an age-based presumption of cognitive incapacity. The next consideration is whether it can be shown that minors generally have enough of a grasp of illness to make important treatment decisions. On this, the literature indicates that there is reasonable evidence that even young children can understand not only the symptoms of their own specific disease, which would be expected, but that they also can show maturity and sophistication in their thinking about them. As a matter of fact, the data show that children who suffer from an illness (and are thus 'experts') actually outscore healthy adults who do not suffer from that disease ('novices'). These data also offer support for the autonomy-based contention that minors should be allowed to make their own health care decisions. In many cases, a thorough comprehension of the meaning of death and its relationship to illness is also critical. Various studies indicate that by age seven, children understand the concept of death; that at around age nine it is often understood as a biological process that is inevitable and final; and that children develop a sophisticated understanding of the relationship between illness and death somewhere between ages eleven and fifteen. Another group of researchers would disengage this understanding almost entirely from age, placing emphasis on experience, instead, as we saw in the expert/novice dichotomy above. Again, both approaches seem to support arguments for decision-making autonomy for minors. But there are other important considerations. Cognitive decision-making capacity and an understanding of illness and death may not be sufficient to the task of making life-affecting—and sometimes life-saving or life-ending – health care decisions. Other factors enter into this equation. For example, consider the case of Gwen. She was a happy sixteen-year-old, looking forward with excitement to her senior year of high school, when her dreams were abruptly interrupted by a diagnosis of non-Hodgkin's lymphoma Gwen's physicians proposed that she immediately receive emergency inpatient radiation, followed by chemotherapy. They were honest with her and her parents that there were some rough months ahead. She would be hospitalized for an extended period, and the chemo might make her very sick; she would probably lose her hair temporarily. The very good news, they emphasized, was that she had an excellent chance of recovering completely. Gwen asked her parents for time to consider what she called "her options." After a short while, she was adamant: She wanted no treatment. Despite being told that her odds of even surviving without radiation and chemo were grim, Gwen had other priorities. She did not want treatment for her cancer that would interfere with the coveted role of captain of the cheerleading team, to which she had just been elected. "You don't understand," she cried, when her parents and the doctors tried to explain to her the importance of treatment. "I feel fine, and I don't want to miss my senior year . . . all the games, and maybe being Homecoming Queen." Most of all, she rejected the notion of treatment because, as she said, "I don't want to be bald. I don't want everyone looking at me." This certainly seems an objectively unreasonable decision. The questions for this essay are how did she reach it, and should she be allowed by law to have the final say? In his discussion of autonomy, we saw Ronald Dworkin suggest that some people should not be allowed to make their own decisions, not because they don't know how to reason, but because they will not make decisions in a manner that protects their capacity to express their own character; the things they value, commit to, and take a critical interest in. This is particularly applicable to our questions regarding minors, since it is not clear at what age most persons have developed sufficient moral maturity to say with meaning, "I value this or that," so that a particular decision is an authentic expression of who he or she really is in a moral sense. In other words, when do most persons grasp that "this is the kind of person I am," or "this is what is really important to me"? Has Gwen? It appears that she is, instead, so sidetracked by the fleeting joys of high school that she has temporarily lost sight of her lifelong goals of college, family, and career—indeed, of life itself. She is, in effect, manifesting typical symptoms of adolescence that reflect a still-developing fundamental moral self, making a decision that is thus not only unreasonable, but inauthentic as well. In a manner similar to the law's recognition of stages of incompetence (never-competent, once-competent, etc.), bioethicists often speak of 'moral self' in terms of those who once had a moral self and those who never had a moral self. But something is missing, for this distinction ignores minors such as Gwen, who are still in the ongoing process of developing their authentic and fundamental moral selves.4 If one believes that cognitive decision-making ability is not enough, that moral maturity or selfhood is necessary in health care decision making, and that that slowly develops over time, then the inclusion of this additional category of "those who are still developing a moral self" is critical. Its acceptance undermines the autonomy-based position that even young children should be allowed to make their own health care decisions. It supports, instead, laws and policies that seek to protect minors until the difficult adolescent years have passed, years which have been described as being, by definition, "a time of unpredictability, of shifting from black to white and from hot to cold."5 Beneficence-based reasoning argues that even older minors, such as Gwen, need this time to experiment and explore, to learn to cope with peer pressure (reflected in Gwen's concern about being bald), to unfold personal life goals, and to develop their own understanding of "the good life." They need this time to become who they are, before being allowed (or forced) to assume responsibility for medical decision making. Conclusion This brings us, then, to the following crucial question. If one accepts that the beneficence-based approach is ethically sound – that a legal age of consent can be ethically defended – the question of whether eighteen years is the right age, still remains. To the accusation that it is an arbitrary marker, one can only respond that that is absolutely correct. However, unless we choose to have no age restrictions at all – not for marriage, voting, driving, or drinking – the selection of any of these age limits will be similarly arbitrary. The fact of the matter is that eighteen is the age which our society has chosen to acknowledge as the transition point from adolescence to adulthood. Eighteen is the age at which persons are legally emancipated from parental care and responsibility, and it thus seems the most reasonable point at which to grant health care decision-making rights as well. 
Ann K. Suziedelis, MA
Suggested Readings Diane M. Reddy, Raymond Fleming, and Carolyne Swain, "Effect of Mandatory Parental Notification on Adolescent Girls' Use of Sexual Health Care Services," Journal of the American Medical Association 288 (2002): 710-14. Jeffrey Blustein and Jonathan D. Moreno, "Valid Consent to Treatment and the Unsupervised Adolescent," in Blustein, Levine and Dubler, eds., The Adolescent Alone (Cambridge: Cambridge University Press, 1999. Questions for Discussion
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