Part I: Health Care Decision Making for Children
1. Recommendations of the American Academy of Pediatrics
In 1995, the American Academy of Pediatrics (AAP) published its recommendations for the role of children in health care decision-making.4 The AAP recommended that the child’s role should depend upon his or her decision-making capacity. The AAP concluded that children who have decision-making capacity should give informed consent for themselves. Although the AAP stated that there were no requirements to obtain parental permission, it tempered this conclusion by encouraging parental involvement "as appropriate."5 With respect to children with developing decision-making capacity, the AAP stated that there were certain situations in which their dissent should be binding (e.g., research) and that even in the therapeutic arena, the child’s decision should "carr y considerable weight when the proposed intervention is not essential to his or her welfare and/or can be deferred without substantial risk."6 For children who lacked decision-making capacity, the AAP deferred to parents unless they (or their decisions) were abusive or neglectful.
The AAP also made specific recommendations about what should be done when parents and children disagree on health care decisions. According to the AAP, if there is parental-child disagreement and the child is judged to have decision-making authority, the child’s decision should be binding. If the child has developing capacity, consensus should be sought. The AAP supported third-party intervention for persistent disagreement between the parent and the child and offered various mechanisms including:
. . .short term counseling or psychiatric consultation for patient and/or family, case management or similar multidisciplinary conference(s), and/or consultation with individuals trained in clinical ethics or a hospital based ethics committee. In rare cases of refractory disagreement, formal legal adjudication may be necessary.7
In part I of this paper, I challenge the AAP’s recommendations regarding 1) the proper role of children and parents in the decision making process; and 2) its suggestions for mediating child-parent disagreements.
2. Are Children Competent to Make Health Care Decisions?8
A major problem with the AAP’s recommendations regarding the proper role for children in the decision-making process is that it assumes that decision-making capacity can be defined and measured. In the medical and psychiatric literature, there exist no objective standards that can easily distinguish between a competent and an incompetent individual. Even if an objective test could be devised, individual tests of competency of every potential patient would exact a high price in terms of efficiency, privacy, and respect for autonomy. Rather, adults are presumed competent on the basis of age, and physicians are not allowed to perform any medical procedure without the patient’s "informed consent." In contrast, non-emancipated children are presumed incompetent and their parents have surrogate decision-making authority. To some extent, the age standard is arbitrary, as there are individuals older than the legal age of emancipation who are incompetent (lack decision-making capacity) and individuals younger than the legal age of emancipation who are competent (have decision-making capacity). But the statutes are not capricious; in general, individuals above the legal age are more likely to be competent than individuals below the legal age.
The AAP offers no guidance as to how to define or test for decision-making capacity, but recommends individual assessment of decision-making capacity on a case-by-case determination. However, since there are no criteria on which to base maturity or decision-making capacity, the decision of whether or not a child has decision-making capacity is dependent upon the judgement of the particular pediatrician— a judgement for which he or she has no training.
Are some children competent to make health care decisions? Although the data support the claim that adolescents and adults make equally competent decisions in medical vignettes designed by psychologists,9 this competency may not apply to real life. Despite their knowledge regarding automobile safety, adolescents account for a disproportionate number of fatal car accidents. And despite their ability to repeat the facts about the transmission of HIV and other sexually transmitted diseases, adolescents tend to overlook long-term consequences. If competency is understood as the ability both to choose and to act to promote one’s self-interest, then the claim that adolescents are competent is not persuasive.
I will ignore the difficulties in determining whether a minor has decision-making capacity and assume that some minors are competent to make at least some health care decisions. If autonomy is based solely on competency, then competent children should have decision-making authority in the health care setting. My goals will be to argue 1) that even if children are competent, that there is a morally significant difference between competent minors and adults; and 2) that competency is a necessary but not a sufficient condition on which to base respect for a minor’s health care decision-making autonomy.
3. Competency and its relationship to autonomy
If a child is competent, are there any advantages in treating her differently than an adult, particularly with regard to respect for her autonomy? One moral argument to limit the child’s short-term freedom is based on the parents and other authorities need to promote the child’s long-term autonomy. Given the value that is placed on self-determination, it makes sense to grant adults autonomy, provided they have some threshold level of competency. Respect is shown by respecting their present project pursuits.10 But respect for a threshold of competency in children places the emphasis on short-term autonomy rather than on a child’s life-time autonomy. Children need a protected period in which to develop "enabling virtues" (habits, including the habit of self-control), which advance their life-time autonomy and opportunities.11 Although many adults would also benefit from the development of their potential and the improvement of their skills and self-control, at some point (and it is reasonable to use the age of emancipation as the proper cut-off12), the advantages of self-determination outweigh the benefits of further guidance and its potential to improve long-term autonomy.
A second moral argument to limit the child’s present-day autonomy is based on the child’s limited world experience such that her decisions are not part of a well-conceived life plan. Again, there are many adults with limited world experience, but children have a greater potential for improving their knowledge base and for improving their skills of critical reflection and self-control. As Willard Gaylin explains:
Surely, part of what goes into our abridgement of the child’s autonomy is the recognition that although he may be [competent] … the limitations of his experience distorts his capacity for sound judgement.13
By protecting the child from his own impetuosity, his parents help him obtain the background knowledge and the capacities that will allow him to make decisions that better promote his life plans. His parents’ attempt to help him flourish may not be achieved, but that does not invalidate the attempt.
A third argument why childhood competency should not entail respect for a child’s autonomy depends upon the significant role that intimate families play in our lives. Elsewhere, I have argued that when the family is intimate, parents should have wide discretion in pursuing family goals, even though these goals may compete and conflict with the goals of particular members.14 In general, family autonomy promotes the interests and goals of both the children and the parents. It serves the needs and interests of the child to have autonomous parents who will help her become an autonomous individual capable of devising and implementing her own life plan. It serves the adults’ interest in having and raising a family according to their own vision of the good life. These interests do not abruptly cease when the child becomes competent. If anything, parents then have the opportunity to inculcate their beliefs through rational discourse, instead of through example, bribery or force.15 While children are still dependent upon their parents for emotional, economic, and material support, parental interest in their children must be balanced against the competent children’s interest in acting autonomously. In contrast, the current movement gives unilateral responsibility to older children who can still benefit from adult guidance, and it denies enduring parental interest in educating and guiding their competent children according to their own values.
If family intimacy is valuable both for what it does and for what it is, then family autonomy should not terminate the moment that a child attains some threshold level of competency. Rather, families can continue to pursue family goals which may compete with the individual goals of family members, even of its competent members. As the ultimate arbiters of intrafamilial conflicts, parents have the right and responsibility to choose these goals. This is not to suggest that parents should not give their child’s opinions serious consideration, particularly if the child is mature; only that parents should retain final decision-making authority until the age of emancipation.16 Although the child’s present-day autonomy is overridden, respect for family autonomy serves to promote the direction and development of the child’s lifetime autonomy. As such, respect for family autonomy respects the child’s developing personhood.
A fourth moral argument against respecting the health care decisions of minors is based on placing the notion of health care rights in context. Most individuals who support health care decision making for children view it as an exception and do not seek to emancipate children in other spheres. But why should a child who is competent to make health care decisions not have a right to make other types of decisions? That is, if a fourteen-year-old is competent to make life-and-death decisions, then why can’t this fourteen-year-old buy and smoke cigarettes? Participate in interscholastic football without his parents’ consent? Or even drop out of school?
Child liberation is a radical proposal with wide repercussions.17 It would mean that children could make binding contracts, and that child labor laws, mandatory education regulations, statutory rape laws, and child neglect statutes should be overturned. It would give children rights for which they are ill-prepared and deny them the protection they need from predatory adults. It would leave children even more vulnerable than they presently are.
My objection to the child liberation position should in no way suggest that I do not place great value on autonomy. My objection is that respect for an individual’s autonomy means respecting her good and bad decisions. Child liberation requires that I respect a child’s present-day freedom regardless of its long-term impact on her developing personhood. Imagine, then, that a fourteen-year-old with new-onset diabetes refuses to take insulin because she fears needles (or because her boyfriend’s religious beliefs proscribe medical care) even though she understands that she will die without it. Who is willing to abandon her to her autonomy? Not many: the laws that give adolescents the right to consent to treatment often do not give them the right to refuse treatment.18
Child liberationists may object that adults also make bad decisions. Since physicians often challenge adults whom they perceive to be making bad decisions, they could do the same with adolescents. The difference is that the competent adult’s decision ultimately prevails. In contrast, most health care professionals for children would be unwilling to respect the treatment refusal of the fourteen-year-old with new-onset diabetes. More generally, we would be unwilling to respect a competent child’s present-day autonomy whenever she makes a bad decision. But if we are unwilling to respect her autonomy on the basis of content, then we are not respecting her autonomy. To only respect those decisions that a child makes with which we agree is not to show respect for the child’s autonomy, but to make a farce out of what is meant by respect for autonomy.
Finally, there are also pragmatic reasons to justify overriding the present-day autonomy of competent children. First, although it may be desirable to obtain a determination of competency for unusually mature and competent children, no such test exists. Second, it may be best if parents recognize their children’s maturity and treated them accordingly, but deny that this justifies granting competent children legal emancipation. Many parents respect their mature child’s decisions voluntarily, and "[i]t is plausible to think that children’s maturity is not completely unrelated to parental good sense."19 Although child liberationists may object because a voluntary approach only encourages but does not legally enforce respect for the adolescent’s autonomy, such an approach does limit the state’s role in intrafamilial decisions, which is important for the family’s ability to flourish.20
4. The Family as the Locus of Decision-Making
My second objection with the AAP’s recommendations is its willingness to involve third parties in the decision-making process. My concern is that these decisions undermine the family as an autonomous unit. Scant attention has been paid to the family and its children-members by moral theorists during the last quarter of the last centur y. Blustein hypothesized in 1982 that contemporary moral theorists ignore children and the family "because they tend to conceive of ethics as the study of those principles that determine how any two individuals are required to regard, and behave toward, one another."21 The history of the philosophy of the family shows that this has not always been the case. From Plato to Russell, all moral theorists discussed the family. Although some contemporary moral theorists have recommended empowering children with rights and allowing them to make decisions for themselves,22 classical liberal theorists did not.23 John Locke, for example, specifically stated that it is a failure of parents and society …
… To turn him loose to an unrestrain’d Liberty, before he has reason to guide him, is not the allowing him the priviledge of his Nature, to be free; but to thrust him out amongst Brutes, and abandon him to a state as wretched, and as much beneath that of a Man, as theirs. This is that which puts the Authority into Parents hands to govern the Minority of their Children.24
Locke was quite specific about when a child comes to be free from both his mother and his father: "when he comes to be of age."25 Locke did not deny the developmental process, but understood that a sharp line needed to be drawn between those who are and those who are not under parental authority.
My concern is that unlike Locke, many of my physician and bioethicist colleagues forget where their professional responsibilities end. Physicians only provide for a child’s transient medical needs; his or her parents provide for all of his or her needs and are responsible for raising the child into an autonomous responsible adult. Goldstein and colleagues at Yale University’s Child Study Center described the harm that health care professionals cause when they think they can replace parents.26 By deciding that the child’s decision should be respected over the parents’ decision, physicians and bioethicists are placing their judgment that the child’s decision should be respected over the parents’ judgement that the decision should be overridden. This is less of an issue of respecting the child’s autonomy, but rather, in deciding who knows what is best for the child. In general, parents are the better judge as they have a more vested interest in their child’s well-being and are responsible for the day-to-day decisions of child-rearing. It behooves physicians and bioethicists to be humble as they are neither able nor willing to take over these daily tasks.
I do not mean to suggest that children, particularly mature children, should be ignored in the decision-making process. Diagnostic tests and treatment plans should be explained to children to help them understand what is being done to them and to garner, when possible, their cooperation. Parents should include their children in the decision-making process to get their active support, to dispel fears if possible, and to help them learn how to make such decisions. However, when there is parental-child disagreement, the child’s decision should not be decisive nor should health care providers require third-party mediation. The decision belongs within the family.
The idea that parents can be both involved in the parent-child disagreement and the final arbiter represents what would be an unacceptable conflict of interest in most settings. Ferdinand Schoeman explains this on the grounds that parents represent their own interests as well as the interests of the family as an integrated whole.
Though entrusting individuals with the responsibility
of making judgments for the common good when their own interests are involved does not accord well with modern constitutionalist conceptions, we should not discount on a priori grounds the prospects for such an arrangement’s being feasible in certain contexts. The context in which such kinds of representation can work are those in which people in fact conceive their roles and their very identity as requiring such an attitude.27
According to Schoeman, parents in intimate families perceive themselves as representatives of the family ’s interests, and this identity can be separated from their roles as representatives of their own interests. As such, parents can serve as both moderator and disputant in intimate family decisions. Again, this is not to suggest that parents should not give their child’s opinions serious consideration, particularly if the child is competent; only that parents should retain final decision-making authority until the age of emancipation. Although the child’s present-day autonomy is overridden, respect for family autonomy serves to promote the direction and development of the child’s life-time autonomy. As such, respect for family autonomy respects the child’s developing personhood.
Despite my arguments, I should add that parental autonomy in health care is not absolute and there are cases in which an adolescent’s decisions should be decisive. For example, I argue elsewhere that a child’s dissent should be binding for some cases in which a child is selected to participate as an organ donor, or as a subject of human experimentation.28 But in neither of these areas would I allow the child to consent unilaterally. Rather, the decision to participate would require the consent of both the child and his or her parent(s). But this paper has focused on the question of when, if ever, adolescents should be given sole decision-making authority.
5. Conclusion–Part I
In summar y, adults are presumed competent and their autonomy is (should be) respected unless they are proven incompetent. There are, however, morally relevant differences between competent children and adults which justify different treatment with respect to autonomy. A competent child’s short-term autonomy can be morally overridden to promote her life-time autonomy. I base this conclusion on a competent child’s greater potential to improve her decision-making skills, her greater potential to broaden her background knowledge, and her parents’ valid interest and responsibility in supporting and guiding her moral and cognitive development, even though she has achieved a threshold level of competency.
Competency is a necessary but not a sufficient condition on which to base respect for decision-making autonomy in pediatrics. Parents have a valid interest and responsibility in guiding their child’s moral and cognitive development and these interests outweigh the costs of denying the child’s present-day decision-making authority. As such, I believe that the AAP’s recommendation to empower competent adolescents to consent and refuse treatment on their own is misguided.
Part 2: Two Case Studies in Adolescent Autonomy
6. Introduction
In part I, I argued against granting adolescents sole decision-making autonomy in health care. Here I want to consider the implications of such a policy revision and compare them with the implications of our current policy. To do so, I examine two controversial issues that challenge both processes. The first issue is health care decision making regarding the withdrawal of life-sustaining treatment. In the November-December 1997 issue of the Hastings Center Report, Robert Weir and Charles Peters argued for the need to affirm the decisions adolescents make about life and death.29 At its extreme, this raises the question of whether physician-assisted suicide, if legalized, should be extended to adolescents.30 The second issue is health care decision making regarding contraception. Since the 1970s, all fifty states have specialized consent statutes, statutes which vary in their scope, but which give adolescents some autonomy to seek and consent independently to the diagnosis and treatment of drug and alcohol abuse, contraceptive counseling, and/or the procurement of contraceptives.31 Some states even allow minors to consent to abortions without disclosure or consent from the minor’s parents.
7. Refusal of Life Sustaining Treatment
In their Hastings’ article, Weir and Peters review the literature of adolescent decision-making and conclude that the data that exist suggest that adolescents over the age of 14 years have decision-making capacity.32 The data that support their conclusion are scant and are based on hypothetical cases answered in a survey setting. The problem is that most of the studies do not reflect how decision making actually occurs because the studies depict hypothetical situations which may not accurately capture the differences that would be revealed in a more naturalistic setting.33 For example, it is not known whether the stress of illness has the same influence on the decision-making capabilities of adolescents and adults. There are some who believe the impact may be worse on adolescents, although to be fair, even they have few data to support this.34
Weir and Peters distinguish three classes of children with respect to decision making regarding life sustaining treatment: 1) adolescents over the age of 14 years who are capable of making decisions; 2) children under the age of 14 years who usually lack decision-making capacity; and 3) adolescents over the age of 14 years about whom there are doubts regarding their decision-making capacity. Their conclusions are similar to those proposed by the AAP.
If the child is less than 14 years of age, but appears to have decision-making capacity, Weir and Peters argue for including the child to the greatest extent possible–that is to seek parental permission and the child’s assent for end-of-life decisions. This would mean that children would have to be told they are dying. The literature supports this position, but currently there are some parents who are unable or unwilling to do so. Weir and Peters believe they must.35 I am less adamant: I would encourage it, I would try to explain to parents that children understand a lot more than we believe, but I am not sure I would always override their decisions. But let us focus on the child older than 14 years of age. With respect to mature adolescents over the age of 14 years, Weir and Peters argue:
Ethically, the physicians should be guided by considerations of patient autonomy and the power of moral persuasion to follow the instructions of the adolescent, unless a particular adolescent demonstrates that he or she lacks sufficient decision-making capacity.36
Nevertheless, they acknowledge that "legally, the parents may still be the responsible party according to state statute."37 That is, they believe that if a child is older than 14 years and the physician finds him sufficiently mature, the physician should respect his refusal of life-sustaining treatment even if the parents want to continue aggressive care.
What does it mean to be "sufficiently mature"? This assumes that we can determine maturity and competency, despite the fact that no tests exist. My concern is that the finding of "sufficient maturity" may be a euphemism for "the physician agrees with the child’s decision." This is not respect for autonomy, but the decision by the physician to replace his or her determination of what is in a child’s best interest with the decision made by the parents.
But ignore my cynicism for a moment and ask what would it mean to empower adolescents to refuse life-sustaining treatment? I could envision a scenario in which parents are unrealistic about their dying adolescent’s prognosis and would want aggressive care despite the adolescent’s plea "enough is enough." Many of the cases of this sort reach consensus– the parents eventually hear the child and understand the "futility" of resuscitation and continued ventilation. But not always, and so some children are forced to bear unnecessary suffering–hopefully tempered by the physician’s obligation to provide sufficient palliative care. This is the sad case and it is the one that draws one to Weir and Peters’ conclusion.
But medical prognostication is not always right and it may be that the child will survive. And it is this doubt which explains why families are given the choice. If we are absolutely certain that treatment X would serve no purpose, treatment X cannot be offered ethically to the family. Imagine, then, a different scenario: an adolescent who refuses life-sustaining treatment because he does not like the side effects of treatment, despite his good long-term prognosis. Such is the case of Billy Best, who made headlines in 1994, prior to Weir and Peter’s article.38 Billy was 16 years old, had leukemia and an eighty percent chance of cure with conventional chemotherapy. But the chemotherapy made him weak and made his hair fall out, so he ran away to avoid further treatment.
My first reaction to Billy was to ask why or how could anyone judge him sufficiently mature, assuming that the media description of his reasons were accurate? The chemotherapy was temporary and his chance of complete recovery very high. Eventually, however, Billy convinced his parents to support his decision to refuse further chemotherapy, and his physicians acceded to the family’s demand. The physicians could have attempted to seek legal authority to force treatment (because he is a minor and his parents’ decision not to pursue further chemotherapy could be defined as neglect), but chose not to.39 Billy had completed most of his treatment course, and given the family consensus, the doctors decided that the incremental gains were offset by the harms and costs that judicial restraint would impose.
But imagine if Billy could not convince his parents and the doctors decided to respect his decision anyway. If I were his parent, I would say, "Say that again doctor. You can save my child’s life, and you won’t? Because he doesn’t want to be bald?" I’d find another physician quickly, and call the state board as well!
The easy objection is that autonomy is about the right to make decisions with which others disagree. And, in fact, adults make many bad decisions. But the inadequacy of some adults (or some of their decisions) is not the standard on which respect for autonomy is or should be based. Laura Purdy explains the problem with a least common denominator approach:
"Even liberationists, after all, lament the mistakes and immorality of adults. It seems to be that instead of asserting children’s rights to be equally silly and weak, it would be at least plausible to argue for the overriding importance of helping children develop the self-control and other enabling virtues necessary for
living more satisfying and moral lives."40
Of course, how would life sustaining treatment be administered? Billy ran away from Boston and was located skateboarding in Texas. Would I, in my role as physician, place him under house arrest? Restrain him if necessary? When I answer yes, this disturbs some of my supporters. And then I am pushed: Would I be willing to restrain him if the treatment success were only 10% but his parents still insisted and he still objected? Here I still want to respect the parents’ right to make health care decisions for their child, but I am more uncomfortable that respect for their decision requires that I restrain their child. I would want more help from his parents: they need to get his cooperation. But in the end, I might still restrain him.
I raise these hypothetical scenarios to consider the consequences of each policy. In both cases, problems arise when parents and their children disagree. If Billy wanted non-treatment and his parents demanded treatment, Weir and Peters would withhold it, even if death were to ensue, and I would force treatment. By treating Billy, he would have most likely lived to hate me. And this reminds many of the case of Dax, the 26 year old with severe burns who was treated for 18 months against his will.41 But Billy is not Dax. Dax is an adult and he should have had the right to refuse life sustaining treatment. If Billy lived to 18 and relapsed, he too would have had the right to refuse further treatment. All I want is to give him the chance to make this decision with a little more life experience to enhance his judgment skills.
Post script: Billy Best is alive and well, 8 years later. After discontinuing chemotherapy, he and his family pursued alternative medical treatments. I am relieved, as it confirms the physicians’ decision not to seek a court order to impose treatment. But it does not change my position about what I would have done had his parents demanded treatment.
8. Adolescent Sexuality and the Specialized Consent Statutes
The second issue involves health care practices that fall under the specialized consent statutes. The statutes were designed to encourage adolescents to seek health care for problems which they might deny, ignore, or delay if they had to obtain parental permission. Here I will focus on the adolescent’s right to seek contraception without parental involvement. While the purported purpose of the specialized consent statutes to encourage early responsible sexual health care for adolescents is laudable, I will argue that 1) the empirical data do not support the claim and 2) that the moral and pragmatic arguments do not justify such a usurpation of parental responsibility.
There are several pragmatic and moral reasons to support such statutes. The pragmatic position is compelling: Given the fact that adolescents can be and frequently are sexually active even when birth control and other sexual health services are relatively inaccessible, they should be given the opportunity to be responsible for their sexual activity. The pragmatist does not need to concede or refute whether the availability of such services increases the numbers of sexually active adolescents. Rather, he or she must argue only that the number is sufficiently large, even when such services are unavailable, as to portend a public health crisis. I accept the pragmatist’s position thus far. But the argument makes two other assumptions which must be fleshed out: 1) that adolescents are competent to make these decisions; and 2) that a policy that grants adolescents autonomy will achieve greater sexual responsibility than would a policy that requires parental involvement.
Consider if the two assumption are false. If the first assumption is false, that is, if adolescents are not competent to make health care decisions, then the statutes are misdirected. If adolescents are incapable of giving informed consent in the area of sexual and reproductive health services, then the statutes unfairly hold them responsible for such measures. If the second assumption is false, that is, if granting autonomy to adolescents does not produce greater sexual responsibility, then the argument for extending autonomy fails. Since parents have, and I have argued, should have presumptive responsibility for their minor children, even if they are competent, legislation should override their responsibility only if it can be shown that the policies will promote adolescent well-being significantly better than a policy based on parental responsibility. The state should not override parental authority on a single issue in which the state is only slightly more effective unless the state is able and willing to take responsibility for the myriad of other concerns of its adolescent citizens. The rationale for requiring significantly better well-being is that state intervention inadvertently risks undermining parental authority in other realms—realms in which we both need and want enduring parental commitment. Unless granting adolescent autonomy will promote significantly better sexual and reproductive health care for adolescents, the state must defer to parental authority.
Again, I will assume that the first assumption is correct and that some adolescents are competent to make such decisions. Let us examine the second assumption which is that the specialized consent statutes will promote significantly better health care for adolescents in the realm of sexual and reproductive services than if adolescents required parental involvement. Despite the confidentiality assured by the specialized consent statutes, adolescents typically delay seeking sexual and reproductive health care for almost one year after they become sexually active.42 Of course, if parental involvement would cause adolescents to delay such services indefinitely, then the statutes achieve significantly better results. Proponents of these statutes need to get empirical evidence that adolescents will seek earlier and better care if they are assured complete confidentiality. Since such data do not exist, the presumption ought to be in favor of parental involvement.
Another pragmatic reason to support adolescent autonomy is that this position avoids conflict. Some adolescents want to act without their parents’ consent because they know that their parents’ religious convictions condemn premarital sexual activity and birth control. But why do we permit these adolescents to seek medical help when we do not allow them to get sex education against their parent’s beliefs? That is, if parents can remove their children from sex education classes because we supposedly respect their traditional lifestyle, then why do we allow physicians to go behind their backs and prescribe birth control to their daughters? And would anyone suggest that we should not tell parents when their adolescents are failing in school to avoid conflict? Surely poor grades are common and are a major cause of intrafamilial strife.
The moral argument in support of the specialized consent statutes is based on the moral claim that competency should entail autonomy which I argued is not the case. It ignores the fact that parents are responsible for responding to the child’s current identity, needs and interests and for shaping the child’s future identity, needs and interests. To grant autonomy to competent children requires that it serve their current selves and their future identities. Parents must be able to justify restricting a child’s present day autonomy in order to enhance his or her overall or long-term autonomy.
Consider, then, the moral and pragmatic arguments to rescind the specialized consent statutes. First, parents have decision making authority for their children because parents are best situated to decide and to act upon what is in their children’s best interest, and because parents are financially and socially responsible for them. This is true for their education, health care, and religious upbringing. There are no compelling moral arguments that show why medical care with regard to sexual health issues should be an exception.
Second, we should rescind the specialized consent statutes because they send adolescents the wrong message. They teach adolescents that their decisions regarding sexuality are unrelated to other aspects of their lives. Consider that parents dictate what schools and church their children attend and in which activities their children may participate, but these same children have legal sanction to ignore parental discretion in the area of sexuality. Consider that these children cannot consent to a throat culture without parental permission,43 but can authorize their physicians to perform a pelvic examination. Third, the specialized consent statutes affirm the adolescents’ attitude that their sexuality is solely a private matter. It is not. Adolescent sexual activity has numerous public consequences for which the adolescent is ill-prepared to accept responsibility. It entails responsibility to themselves (by delaying sexual gratification until they are emotionally and psychologically prepared), responsibility to their partners (by practicing safe sex), and responsibility to their community (by avoiding parenthood until they are both emotionally and financially capable of caring for a child).
By arguing against the specialized consent statutes, I do not mean to deny the need for a public commitment to prevent and treat the unwanted consequences of adolescent sexual activity. In that vein, the specialized consent statutes are on the mark: they affirm the community’s belief that the cost of unwanted adolescent pregnancy and untreated sexually transmitted diseases is too high. But the implementation of these statutes entails moral hurdles for the ethical physician: collusion against parents, disrespect for parental conceptions of the good, and a disregard for the adolescent’s need for further parental guidance. There must be other ways to minimize the negative consequences of adolescent sexuality without the specialized consent statutes which I discuss elsewhere.44
9. Conclusion–Part 2
Health care decisions are one of many decisions that are made by parents for and with their children. As such, who should have decision making authority and who should have the right to intervene must be kept in context. In our culture, we place great weight on the right of parents to raise their children according to their own values. This right is not absolute and we can and must challenge parents who are neglectful even if well-meaning. But in the vast majority of cases, we should leave medical decisions for children within the family. We should do so with our eyes open to its implications for adolescents, their families, health care providers, and society at large.
*Part I of this paper is based on a previous work, Lainie Friedman Ross, "Health Care Decision Making by Children: Is it in their Best Interest?" Hastings Center Report, 1997; 27: 41
45. This was revised into chapter four of my book, Children, Families and Health Care Decision Making. Oxford, UK: Oxford University Press, 1998.
Part II of this paper is based on two previous works, Lainie Friedman Ross, "Adolescent Sexuality and Public Policy: A Liberal Response." Politics and the Life Sciences, 1996; 15: 1321, and Lainie Friedman Ross, "Adolescent Sexuality and Public Policy: An Unrepentant Liberal Approach." Politics and the Life Sciences, 1996; 15: 323-28. These articles were revised into chapter eight of my book, Children, Families and Health Care Decision Making. Oxford, UK: Oxford University Press, 1998.