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With few notable exceptions, current policy presumes that minors, defined in most states as children under the age of eighteen, are incompetent to make decisions about their health care. However, recent highly publicized cases, including the case of a fifteen-year-old Florida boy who engaged in a legal battle over the right to refuse treatment following a liver transplant and the case of a Massachusetts teenager who fled across the country in order to avoid chemotherapy for Hodgkin's disease, have resulted in renewed calls for policy review concerning the rights of children to assent to medical care. The debate is both multifaceted and complex. It encompasses such diverse issues as whether parents should be allowed to enroll their IHV- positive children in clinical trials when there is no obvious benefit to the individual (though there may be a benefit to other children), whether dying children should be given the right to possess living wills, whether parents should be allowed to give consent to organ donation from one of their children for the sake of a sibling, and whether children whose parents have requested institutionalization should be allowed hearings to refuse psychiatric care. Yet, nowhere is the debate over medical care for children more contentious than when discussing the justified societal limits and legal sanctions that may he placed on religiously motivated parents who make medical decisions affecting their children. As a result of adherence to their religious convictions, such parents either fail to provide necessary medical care for their children or impose medically futile treatment, sacrificing a child's health, well-being, and at times, the child's life itself. The polemic surrounding this particular issue has been intensified by the introduction in the U.S. Congress of a parental rights bill sponsored by conservative politicians and religious leaders who are seeking broader protections for parents against intrusions by the state in the realm of education and public health. The proposed "Parental Rights and Responsibilities Act" is accompanied by amendments to the constitutions of twenty-eight states that follow model language asserting that "the right of parents to direct the upbringing and education of their children shall not be infringed."1 Although the major impact of this bill would likely be felt in the area of education, children's rights advocates, including members of the American College of Pediatrics, have expressed concern over the potential ramifications for children's health. They, along with other critics of the proposal, argue that parental rights must be balanced against a legitimate governmental interest in the protection of children, that allowing individual states to place legislative obstacles in the way of government's duties under the principle of parens patriae will only jeopardize the health and welfare of children.2 Furthermore, such legislation is likely to obfuscate the already muddled case law surrounding what limits may be placed on parental decision making when a child's life is at stake. In what follows, I will consider the extent to which we are justified in restricting religiously motivated parents from refusing medical treatment for their children.3 This, in turn, will involve an investigation into how influential the values of religious tolerance and pluralism should be in shaping policies that involve not only determining and protecting the child's interests, but also determining who has the right to make such decisions. I will further consider the basis on which these decisions should he made and how conflicts should be resolved when a child's interest in health, well-being, and future self-determination is at odds with the parents' interest in freedom of religious belief and practice. I argue that strict limits ought to be placed on parents' rights in the context of medical decision making and that these limits should take two forms: (1) the repeal of exemption clauses in child abuse and neglect statutes that pertain to religiously motivated denial of necessary medical care, and (2) the inclusion of legal standards that give a voice to children in the courts, allowing them to participate in medical decision making. A BRIEF HISTORY OF PARENTAL
RIGHTS IN RELATION TO
Throughout its legislative history, the U. S. Supreme Court has never directly addressed the question of what limits the government may impose on parents making medical decisions for their children. Still, a number of important cases related to parental rights and state intervention have had a significant impact on decisions in this area. In these cases, the courts were involved in assessing the appropriate limits of the state's infringement on parental autonomy. During the first half of this century, three cases were paramount in setting the stage for determining limits on state intervention. First, in 1923 the U.S. Supreme Court, in Meyer v. Nebraska, invalidated a state law enacted during World War I that banned the teaching of foreign languages prior to the eighth grade. In deciding this case, the justices cited, among the liberties falling under the provisions of the Fourteenth Amendment, the "right to marry and [the) right to establish a home and bring up children."4 The Court further ruled that these rights "may not be interfered [with], under the guise of protecting the public interest, by legislative action which is arbitrary or without reasonable relation to some purpose within the competency of the State to efFect."5 A second case, Pierce v. Society of Sisters, struck down Oregon's compulsory public school attendance law in 1925, allowing parents to "direct the upbringing of their children as they see fit.”6 Both rulings are considered decisive in establishing the family as a private realm that the state cannot enter without a compelling interest. In addition, in the case of Pierce, the Court recognized for the first time parental authority to waive the positive claim rights of children-in this case to be provided with a public education. Notably, like its predecessor Meyer, the Pierce decision was based on parental claims to due process under the Fourteenth Amendment. Whereas the two previous cases reinforce parental authority with respect to child rearing, including the right to control that child's religious development, limits to this authority were outlined in a now-famous 1944 ruling, Prince v. Massachusetts. The Prince case involved the question of whether appeal to rights under religious freedom could exempt a Jehovah's Witness defendant from prosecution under child labor laws for having a nine-year-old niece in her custody distribute religious reading material in the evenings. Despite the fact that this case did not involve consenting to medical care, its repercussions for the rights of parents to refuse medical treatment on behalf of their children has been quite extensive, in setting limits on the activities one can permissibly impose on children, the court made clear that "the right to practice religion freely does not include liberty to expose .. . the child to ill health or death."7 The justices maintained that "the state has a wide range of power for limiting parental freedom and authority in things affecting the child's welfare."8 Furthermore, in a passage most often cited against parents seeking religious exemption from prosecution for refusing necessary medical treatment for their imperiled children, the Court asserted, "Parents may be free to become martyrs themselves. But it does not follow they are free, in identical circumstances, to make martyrs of their children before they have reached the age of full and legal discretion when they can make the choice for themselves."9 In spite of the ruling in Prince, however, the position favoring parental authority that began with Meyer and Pierce, culminated in 1972 with the Supreme Court's decision in Wisconsin e. Yoder which has been the only Supreme Court decision upholding a parental free exercise claim. in Yoder, Amish parents argued that compulsory education laws for their children through the age of sixteen violated their rights under the Free Exercise Clause of the first Amendment. Being forced to educate their children outside the Amish community past the eighth grade would expose their children, they argued, to "higher learning which tends to develop values the An1ish reject as influences that alienate man from God."11 In balancing the rights and interests of the parents against the interests and duties of the state, the Court noted that, "the Wisconsin law affirmatively compels them, tinder the threat of criminal sanction, to perform acts undeniably at odds with fundamental tenets of their religious beliefs." The state's interests in this case were framed in terms of a societal interest in preparing children to "meet the duties of citizenship" 12 and "not become burdens on society because of educational shortcomings."13 The Court ruled that the state failed to justify overriding the religious rights of parents in this instance, citing the self-sufficiency of the Amish community and the absence of the Amish from dependency on welfare and embroilment with the criminal justice system. While the Yoder decision rendered by the Court was framed solely in relation to the members of this particular religious community, whose existence was deemed threatened by state compulsion to expose their children at a vulnerable age to the influences of the outside world, the decision has been widely used by the courts to expand parental rights. Since this landmark decision, states have gone well beyond the intended scope of this case to accommodate the religious beliefs of parents, denying subgroups of children protection under child welfare and education laws. Indeed, despite the fact that Yoder subjects parental duties and rights to limitations "if it appears that parental decisions will jeopardize the health or safety of the child, or have potential for significant social burdens,"4 beginning in 1974 Congress invited a flurry of legislation in the form of statutes designed to protect religiously motivated parents from neglect and endangerment charges for choosing spiritual treatment or care over traditional medical care for their children. The statutes were encouraged by the Child Abuse Prevention and Treatment Act and regulated by the Department of Health, Education, and Welfare (HEW), which required states receiving federal financial assistance to include a religious exemption in their definitions of "harm or threatened harm to a child's health or welfare." As a result of this religious exemption, accommodations were made such that "a parent or guardian legitimately practicing his or her religious beliefs who thereby does not provide specified medical treatment for a child, for that reason alone shall not be considered a negligent parent or guardian. "15 In 1983, after the Department of Health and Human Resources had taken over for HEW, the Secretary of Health and Human Services concluded that there was no legal support for this sort of religious exemption, Therefore, the regulations related to the Child Abuse and Prevention Act were expanded to include parental "failure to provide adequate medical care." However, this expansion was ineffective given that most states had by this time drafted independent statutes allowing for religious accommodation in instances of misdemeanor neglect. In fact, even though the religious exemption clauses have been dropped from the guidelines issued by the Department of Health and Human Services, most states have adopted and retained statutes that restrict definitions of child abuse and neglect from applying to religiously motivated actors. In the absence of a federal mandate, there remains a good deal of state and local flexibility regarding the scope and interpretation of such exemptions. SETTING STATE'S LIMITS ON PARENTAL DECISION MAKING Those who have sought to shield religiously motivated parents from prosecution under child abuse and neglect laws believe that the exemptions are justified by appeal to the Free Exercise clause of the First Amendment. Thus, along with the liberty interests under the Fourteenth Amendment to raise children as one sees fit and to engage in religious indoctrination, the respect for tolerance and pluralism implied by the First Amendment is seen as justifying the exclusion of this particular group of parents from having neglect statutes applied to them. Are such exemptions truly justified, or do they go beyond the scope of permissible accommodation? As we have seen, the Prince case, while upholding parental free exercise rights that include training and indoctrination of children on religious matters, did not extend the scope of protected conduct to practices seriously endangering a child's physical health or safety. Parents have the right under free exercise of religion to control the minds and behavior of their children, but their rights are limited with respect to religious Practices that risk the lives of children under their care. Prince makes it clear that the state's interest in protecting the welfare of children and in promoting certain social values must be balanced against parental free exercise rights and may. in many cases, override them. I believe that in elevating the religious interests of parents over state cancer us for the lives and welfare of children, these exemption statutes violate the principle made explicit in Prince that parents do not have the right to make martyrs of their children who have not yet reached the age of full legal discretion.16 I will set out four arguments that provide additional support for Prince's restriction of parental religious rights in contexts where significant interests related to children's health and well-being are at risk. The first is a moral and political argument that appeals to the state's role in ensuring "open futures" for children. The second argument appeals to children's rights to equal protection from the state. The third argument draws out the implications of equal protection for laws that punitively affect children as a result of their parent's conduct. The fourth and final argument will make the case that such parental exemptions violate the Establishment Clause of the First Amendment. Childhood is in many ways a stage when children are understandably dependent upon their parents not only for the provision of basic material needs but also for the socialization and education that provides them with values and worldviews as well as the skills that will enable them to function independently of their parents in the future. Though childhood is an inevitable condition of dependency, it is also a temporary condition. It normally leads to adulthood, when children not only function independently of their parents but also may choose paths in life that are not wholly congruent with the worldviews and values of their parents. While parents may predictably raise their children in accordance with their values and worldviews, the recognition that their children must choose their own paths in life when they reach adulthood entails that parents have a responsibility to refrain from decisions that close off significant future opportunities for their children. This point has been emphasized by Joel Feinberg, who additionally connects these considerations to the role of the state. Feinberg argues that increased intervention on the part of the state is deemed justified if one adopts the view that the state plays a role as an equalizer, assuring that children from vastly different social, economic, and cultural backgrounds all receive a decent minimum level of health care and education, thereby allowing for what Feinberg terms an "open future." I would argue that or those children whose parents are exempted from providing standard medical treatment and immunizations against crippling and life-threatening diseases, the risks are even greater of being denied Feinberg's "open future." In fact, such laws place the child at risk of having no future at all. In addition to the state function that Feinberg mentions, we need to keep in mind another important state function, that of protecting the rights and interests of all its members he state regulations from which religiously motivated parents are exempt are intended to serve as protections for children against parental abuse, neglect, and ignorance. Denying this statutory protection to a group of children simply because their parents happen to hold particular religious views violates constitutional provisions for equal protection. Legal scholar James Dwyer points out that an equal protection approach to challenging exemption statutes for religiously motivated parents has the advantage of viewing children as constitutional rights bearers instead of merely the property of their parents.17 Dwyer contends that when the parents' free exercise claims seem to be the only constitutional rights in the picture, it may seem that the state ought to deny protection to the child. However, an equal protection challenge to this view emphasizes that the child has competing constitutional rights to equal protection in his or her own right, and that the state has a constitutional obligation to protect the child. Following Dwyer, I would argue that provisions offering religious exemptions for parents allow parental rights to completely subsume the rights and interests of children and fail to acknowledge children as legal individuals who deserve state protection. Since child abuse and neglect laws exist precisely to protect children from the harmful conduct of others, including their parents, these exemptions make no sense unless we have some reason to think that religiously motivated parents would not act in ways that adversely affect the rights and interests of their children. However, we do not have any good reason to make this assumption. Religiously motivated parents may differ from many other abusive or neglectful parents in that they may believe their decision not to provide medical treatment for their sick child is in the best interest of the child. However, where such beliefs are arguably false, and where parents acting on such beliefs endanger the child's life and well-being, the state fails in its duty to provide equal protection to children if it permits parental good intentions to justify child neglect and abuse. A third and related argument against religious exemption appeals to the idea that it is unfair for children to suffer punitive consequences as a result of their parents conduct. As the Supreme Court decisions in Gomez v. Perez," striking down laws exempting fathers of illegitimate children from paying child support, and Plyler v. Doe,19 which invalidated attempts by Texas to deny education to undocumented children of illegal aliens, made clear, it is judicially unacceptable to punish children "on the basis of a legal characteristic over which children can have little control" given that "children can affect neither their parents' conduct nor their own status."20 Thus, the Court held that imposing a burden on children because of their parents "does not comport with fundamental conceptions of justice."21 Exemptions for religious objectors likewise impose a substantial burden on children whereby they are allowed to suffer punitive consequences because of their parents' conduct. In this case, the punitive burden is imposed on those children who are excluded from the protections offered by child abuse and neglect statutes. Our long tradition of respect for parental autonomy and our commitment to the values of tolerance, pluralism, and cultural diversity lessen neither the children's rights claims nor the state's responsibilities to protect children from abuse. Here, the state affirms that the same acts in one case are sufficient to constitute abuse but that in exactly similar circumstances accommodation of the religious beliefs of the parents eliminates the acts from the category of abuse and neglect. By their very nature, then, such exemptions undercut the purpose of protecting the health and welfare of children. A fourth and final reason for opposing exceptions for religiously motivated parents rests on the argument that such exemptions reflect an endorsement of religion contrary to the Establishment Clause of the First Amendment. According to Justice Sandra Day O'Connor, "Endorsement [of religion] sends a message to nonadherents that they are outsiders, not full members of the political community, and an accompanying message to adherents that they are insiders, favored members of the political community."22 An analysis of whether the prohibition against endorsement has been violated requires administering a two-pronged test asking: (I) Is the actual purpose of the government to endorse or disapprove of religion? (2) Irrespective of the government's actual purpose, is the effect of the practice to convey a message of endorsement or disapproval? An affirmative answer to either question is sufficient to render the challenged practice invalid. Thus, in the case of Employment Division Services of Oregon v. Smith, concerning whether the state could deny unemployment benefits to two Native Americans who were fired for engaging in the ceremonial use of peyote as part of a religious practice, Justice Antonin Scalia contended that the First Amendment should not he construed to permit governments to enact legislation "solicitous of religious belief."23 While the Smith decision is regarded as problematic by many, it raises considerations pertinent to the issue of exemptions for religiously motivated parents at the center of this essay. Allowing the state to uphold the religious-freedom rights of the parents at the expense of their children's rights to protection from abuse and neglect arguably sends a message of state endorsement to an "objective observer." Both the negative rights of children to be free from harm and the positive rights to protection from the state are sacrificed in favor of preserving the rights of religiously motivated parents to exercise their religion as they see fit. Since exemption laws impermissibly provide increased protection from prosecution simply in virtue of parents' religious beliefs, supporting this type of legislation has the unconstitutional effect of benefiting religious over nonreligious individuals. Smith upheld the view that there was no constitutional basis requiring governments to enact legislation "solicitous of religious believer' in a case where the only harms suffered as a consequence of religious belief were those suffered by adults who adhered to those beliefs and where the harms arguably did not amount to serious risks to their health or life. I contend that it is far more objectionable to enact legislation solicitous of religious beliefs where the central harms that occur as a result of the beliefs are suffered by the children of those who adhere to these beliefs and where the harms amount to serious risks to the lives and well-being of children. LISTENING TO CHILDREN'S VOICES While the most direct approach to redressing unjust laws involving religious exemption statutes is to repeal the statutes themselves, children's rights advocates have argued that this approach must he accompanied by judicial reform that provides children with a voice that, until now, has been denied them in the courts. Thus, Wendy Anton Fitzgerald has urged that just as critical race theorists and feminists have asserted that the law's definition of personhood must expand to include racial, gender, cultural, and other differences, the law should respect and appreciate children's perspectives and provide a mechanism for the inclusion of children's voices.24 Traditionally, the
exclusion of children's voices from the courtroom has been based on findings
such as those in Thompson v. Oklahoma, where the court stated that "the
difference that separates children from adults for most purposes of the
law is children's immature, undeveloped ability to reason in an adultlike
manner."25 This incapacity theory of childhood, supporting much of the
current constitutional law about children's rights, typically denies children
any decision-making role in their own medical treatment. However, proponents
of including children's voices in the courts point to research indicating
that children are often capable of making important life decisions in a
rational manner, including decisions about medical and psychological treatment.
In addition, apart from the quality of their decisions, studies suggest
that "children as young as six can be astute in perceiving procedural injustice."26
Allowing children to participate in decision making regarding their own
health is likely to enhance children's perceptions that they have been
treated fairly. In turn, children's involvement in the process has potential
therapeutic benefits as well. Thus, even if children's voices merely echo
the voices of their parents, who have succeeded in religious indoctrination,
this approach may improve the well-being of the child and encourage the
establishment of the child as a person independent from the family.
Focusing on the fact
that Tuttendario's parents were not motivated by cruelty and that the refusal
of surgery was not in itself life-threatening, the court remarked:
We see no warrant in the statutes for granting this request. We have not yet adopted as a public policy the Spartan rule that children belong, not to their parents but to the state. .. . Even if the law had advanced so far as to consider defective judgment of parents in a critical case a good reason to deprive them of their guardianship, we would not be prepared to say that a clear case of defective ,judgment has been here made out. The science of medicine and surgery, notwithstanding its enormous advances, has not been able to insure an absolutely correct diagnosis in all cases, and still less an absolutely correct prognosis. There is always a residuum of the unknown, and it is this unknown residuum which scientists, by a necessary law for the development of science, disregard, but which parents, in their natural love for their children, regard with apprehension and terror.28
Perhaps because parents
exercising their religious beliefs, like Tuttendario's parents, are not
motivated by cruelty, the courts have been careful to distinguish neglect
involving refusal of medical treatment on religious grounds from other
kinds of abuse and neglect. Even so, since the Tuttendario decision, there
has been an expansion of the "life-threatening exception" to include nonemergency
procedures designed to improve a child's quality of life. Emerging in the
second half of the century, this trend in policy related to child protection
was evidenced in two interrelated movements-the development and advancement
of child abuse reporting statutes, and the provision of guidelines for
both emancipated and unemancipated minors to consent to treatment for certain
medical conditions.
For instance, consider the eases of fifteen-year-old Benny Agrelo, who refused to take necessary medication following a liver transplant, and sixteen-year-old Billy Best, who fled from Massachusetts to California because he couldn't cope with the hair loss, nausea, and weakness front his regimen of chemotherapy.] Similar to the ease of a young woman seeking an abortion, medical decisions involving life-sustaining treatment are irreversible and must be made within a limited amount of lime. Moreover, the burdens imposed by infringements on privacy and bodily autonomy are substantial in both contexts. Thus, while the "mature minor" standard is vague and lends itself to differing judicial determinations in individual cases, explicit expansion of the mature minor doctrine to the realm of medical consent and treatment refusal would have the benefit of promoting children's rights to self-determination based on privacy and bodily integrity. While ultimately the courts ruled in their favor, an earlier recognition of these rights could have spared Agrelo and Best untold pain and suffering. Yet even with a statutory
or common law acceptance of children's rights to self-determination in
such eases, there are special challenges when dealing with children of
religious objectors. This follows from the fact that pediatricians have
ordinarily served as gatekeepers concerning whether a child's ease should
be brought to the courts. What is problematic in cases involving religiously
motivated parents is that the child may never see a medical practitioner
outside of the religious community. Hence, if we want to provide meaningful
protection for children, efforts to include children in the decision-making
process must be preceded by mandatory reporting to the state by parents
who seek to deny traditional care in cases of serious illness. Disputes
concerning the effectiveness of such laws in serving as either specific
or general deterrents have not prevented abuse and neglect statutes from
being enacted overall and should not be an overriding consideration here
either. Moreover, the often-cited problem of determining the exact point
at which otherwise legal behavior becomes illegal, when, for instance,
the child becomes seriously ill, is not exclusive to this type of situation
and has not served as sufficient justification for failure to apply the
law.
Several factors, including the notion of parents' ownership of children, the essentially private nature of families that makes it difficult to know what goes on behind closed doors, and the extreme powerlessness of children, make it necessary for the courts to establish the child as a person, independent from the family. Indeed, unless we are willing to take the obvious step of abolishing laws that overtly discriminate against children, we will continue to relegate children to the status of a legally oppressed minority. You can E-mail Professor Lynn Pasquerella at: paski@uri.edu
Footnotes: 1. Peter Applebome, "Array or Opponents Battle over
'Parental Rights' Bills," New York Times, 29 April 1996, A1.
Comments? Please contact Professor Al Killilea at: hookshot@uri.edu The PSC Report invites unsolicited submissions (really, we need the material!!) of essays, articles and editorial comments. Submissions should be sent via e-mail to hookshot@uri.edu or via US Mail on 3 1/2" diskette or CD-ROM with hardcopy to: The PSC Report |