The Conundrum of Children in the U.S. Health System

Children are routinely excluded from expressing their opinions involving medical decisions that affect them. This article discusses the complex reasons why children’s voices typically are not heard in the US, the consequences of their dis-empowerment, and the ethical obligations of health care providers to advocate for the rights of children even in the absence of a legal mandate to do so.

The Conundrum of Children in the U.S. Health Care System

 
Wanda K. Mohr Ph.D., R.N., F.A.A.N.
 
Associate Professor
 
School of Nursing
 
Sheila Suess Kennedy J.D.
 
Assistant Professor
 
School of Policy and Environmental Affairs
 
Indiana University Purdue University Indianapolis
 
Indianapolis, IN
 
 
 
 
 
Correspondence to: Wanda K. Mohr Ph.D., R.N., F.A.A.N.
 
Address: 6441 Greenridge Drive Indianapolis, IN  46278
 
Email: wkmohr@iupui.edu
 

Abstract

 

      One area in which children’s rights are rarely considered in the United States is that of autonomy over their bodies.  This right is routinely ignored in arena of health care decision-making.  Children are routinely excluded from expressing their opinions involving medical decisions that affect them.  This article discusses the complex reasons why children’s voices typically are not heard in the US, the consequences of their dis-empowerment, and the ethical obligations of health care providers to advocate for the rights of children even in the absence of a legal mandate to do so.

 
 
 

Keywords: UN Convention; children’s rights; professional ethics; legal-ethical issues; health care decision making.
The Conundrum of Children in the U.S. Health Care System

            In 1989, members of the United Nations held a landmark Convention on the Rights of the Child, affirming an international commitment toward safeguarding the physical, social, cultural, and religious rights of children.  The convention was passed by the U.N. General Assembly, and then it passed out of the collective consciousness of the peoples of the U.S.  As a result, the children of the richest country in the world continue to occupy an indeterminate position between property and constitutionally protected citizen.  This situation ensures that children in the U.S. are denied not only some of the basic rights available to adults in a free society, but rights that are arguably appropriate for all sentient beings, whether fully mature or not.

            One area in which those rights are rarely considered is the right of children’s autonomy over their bodies.  Nowhere is that right less respected than in the decision of health care decision-making.  Children are routinely excluded from expressing their opinions involving medical decisions that affect them.1 In this article we discuss the complex reasons why children’s voices typically are not heard in the US, the consequences of their dis-empowerment, and the ethical obligations of health care providers to advocate for the rights of children even in the absence of a legal mandate to do so. 

The UN Convention on the Rights of the Child

            The UN General Assembly adopted the UN Convention on the rights of the Child in 1989.  The convention appeared at a time when the need for improvement in the status of the world’s children was painfully apparent.2 The Convention incorporates a number of components: 1) a set of standards in the form of stipulated rights and freedoms to be enjoyed by all the world’s children; 2) a formal, legal commitment of state authorities to take such measures as are necessary in order to bring the quality of their children’s lives as close as possible to that which is prescribed in the document; and 3) mechanisms and procedures to monitor the performance of states parties in relation to the Convention’s standards, in order to call attention to places where corrective action is called for and to provide some guidance and assistance to states parties desirous of improving their performance.  The Convention consists of a preamble and 41 substantive articles.  Article 1 defines what the convention means by “child” and articles 2 through 41, which follow, extend civil, political, religious, economic, social, cultural, and humanitarian rights to all children.  The substantive articles each outline specific principles of rights: for example, the right to freedom of expression of opinion (Article 12), or freedom of thought (Article 14).  By the same token, the document underscores that the degree of freedom granted to children should be guided by a consideration of their development and evolving maturity.3

Ratification status

            Signing the UN Convention signals a nation’s intent to pursue ratification.  Ratification means that a nation agrees to be legally bound by the terms of the Convention.  Since the Convention was opened for nations’ signatures in 1990, only Somalia and the United States have failed to ratify.4 Somalia has no recognized government and thus is unable to proceed to ratification.

            With respect to the U.S., a number of reasons have been given for its failure to ratify the convention.  Official reasons include the unwillingness of the federal government to interfere with the discretion and power of individual states’ power to create, amend, and adjudicate their own laws concerning children.5, 6 A second reason is that some of the rights accorded to children under the convention are not recognized as rights in the U.S.  An example is the fundamental right to education articulated under Article 28.7 A rarely appreciated distinction between the legal system in the United States and those in countries with systems based upon the Romano/Germanic legal model is that “rights” in America are generally negative in character; that is, they are rights to be free from certain types of state interference.  Romano/Germanic systems view rights as positive entitlements to specific treatments or goods; those systems are more consistent with many of the Convention’s enumerated rights, and do not present some of the legal barriers faced in the United States.8  “For the one, justice is prevention of state oppression; for the other, justice is the orderly distribution of social benefits, both material and intangible.” 9, p.4 A third explanation has to do with actual conflicts between laws in the US and Convention principles, for example, the articles forbidding corporal punishment in schools and the use of capital punishment.  Other, less official explanations, involve widespread misconceptions about the Convention’s intent.  For example, fears have been expressed that the Convention’s support of adoption will weaken rights of parents.10  Many of those misconceptions have been promulgated by opposition groups and political authoritarians.  These individuals express concern that the convention would usurp national and state sovereignty and undermine parental authority. 11 Whatever the reason, the lack of action is consistent with the U.S.’s lackluster record of ratifying major human rights treaties despite a political rhetoric extolling human rights.  For example, the Convention on the Prevention of Punishment of the Crime of Genocide took more than 30 years to be ratified by the US.12

How the UN Convention Applies to the Rights of Children in Health Care Settings

            By asserting children’s right to life as a distinct personality and right to possess a legally recognized identity, the Convention is the first document to explicitly state that children have a right to ‘have a say’ in processes affecting their lives.  The inclusion of identity as an element of children’s right to life is grounded in the idea that unless individuals possess identity as a legally recognized attribute, they are unable to claim the rights available to all persons residing within the jurisdiction of a particular state.  These rights presuppose not only life itself, but also the autonomy to determine what is to be done in order to sustain that life and enhance its quality.

            Article 12 of the convention provides that children who are capable of forming views must be assured the right to express them on all matters affecting them, and these views must be given due weight.  In addition, under Article 3, the convention provides that a child ‘considered by internal law as having sufficient understanding’ is to be granted and is entitled to request the right to receive all relevant information, to be consulted and to express his or her views, and to be informed of the possible consequences of compliance with these views and the possible consequences of any decision.

The American Legal Context

            In the US, the right of a competent adult to bodily autonomy is taken very seriously; there are even criminal penalties against physicians who violate it.13 Likewise, competent individuals have the right to refuse treatment, a right courts rarely extend to minors.  But children are not recognized as competent under U.S. law; their due process privacy rights may be infringed upon a showing of a “significant” state interest, while the state must show a compelling interest to justify similar infringement of the rights of an adult.14 Moreover, children are naturally dependent on their parents or guardians, who are legally presumed to have their best interests at heart.

            Competency in the U.S. in terms of decision-making capacity over one’s health care decisions is defined by reference to the legal concept of competency.  Competency is one of three components (together with voluntariness and information) necessary for a patient’s treatment decision to be considered legally valid.15 Legal scholars have included several components necessary to meet the test of competency.  They are: 1) evidence of choice; 2) reasonable outcome of choice (the option corresponds to the choice that a reasonable person might make; 3) rational reasoning (in making the decision); 4) understanding of the risks, benefits and alternatives.16

            In the United States, children are generally considered to be incompetent to give voluntary consent to what is done to their bodies by way of medical procedures.7 In a review of cases involving life-sustaining treatment, Evans found that the child’s stated wishes were considered in only 13% of the cases.1  Moreover, in the U.S., parents continue to invoke the right to make medical decisions for their children on the basis of their constitutional right to privacy, which has been held to include the right to raise their children in accordance with their own beliefs and values.  These rights have often been interpreted in ways that effectively disempower children.  In order to understand why the United States addresses the rights of children as it does, it is necessary to understand both the history of children’s rights, and the ambiguity of the term “children’s rights” as it has been used and understood within legal discourse.

            Walker, Brooks and Wrightman have described the historical reality of childhood in a brief, but quite telling passage:


“Until modern times, childhood was an almost universally grim experience.  For hundreds of years, children were treated primarily as chattel.  They were bought, sold, cared for and abandoned in much the same way as a pair of shoes.”7, 17, p.20


            At English common law, children were considered the property of the father, who could dispose of them in his will like any other property.18   It wasn’t until the 16th century that children’s status began gradually to improve; indeed, the very idea of childhood did not develop until that time.7, 19  The emergence of the concept of childhood, a concept that recognized vulnerability and acknowledged special needs requiring nurture and protection, also gave rise to the legal and ethical dilemmas faced by proponents of children’s rights today.  If, as many commentators have noted, the United States lacks a coherent policy on children’s rights, much of the problem is that different people use the term “rights” to mean different, and often contradictory, things.

            American laws concerning children have been informed by two very distinctive approaches: a paternalistic, or progressive, approach which focuses upon nurturance and protection; and an individual-rights approach, which emphasizes the child’s age-appropriate right to personal autonomy.20  To the first approach we can attribute legislation making school attendance compulsory, establishing juvenile courts, and prohibiting child labor.  These are measures that assume a large degree of dependence by children on adult society.  In the second category, we might list court cases such as Brown v. Board of Education, which recognized children as rights-bearing individuals, or In re Gault, which entitled juveniles to court-appointed counsel, or Tinker v. Des Moines, which protected the right of minors to express political opinions in a non-disruptive manner in a public-school setting.20  Studies have shown that in the U.S. there is strong political support for the extension of the protective, “nurturant” rights, but far less support for rights of self-determination.21  If we are to rationalize these two approaches, and forge a comprehensive framework within which to discuss both the social and individual rights of children, we must determine when it is appropriate to treat a given individual as a dependent child requiring nurturance, and when as an adult entitled to individual autonomy and voice.  The legal system has struggled with that core question, a struggle made more difficult because rights and duties of parents and (to a lesser but not inconsiderable extent) the interests of the state are also implicated.  As one commentator has noted, the courts have struggled to mediate the conflict between “democratic ideals of individual freedom and the sanctity of the family unit.” 22, p.461  The result is a framework that rests on a sharp distinction between public and private responsibility for children’s welfare, with the public assuming responsibility only when the private actors have defaulted.  The primacy of the power given to parents and family rests on a belief that children need authority rather than autonomy, that “rights” so understood are not in the child’s best interests.20

            It is arguably misleading even to suggest the existence of an American jurisprudence on children’s rights; it is more accurate to say that there are a number of court decisions that have affected the legal rights of children.  As Minow has noted, children have no political power and are not usually the focus of laws and decisions that affect them.  Child labor laws went nowhere until labor unions decided that such laws would be economically beneficial to their members; similarly, court opinions affecting children typically arise in the context of other conflicts: child custody disputes, religious liberty cases, the criminal justice system and conflicts around medical treatment and intervention.  Those disparate cases provide the underpinnings of the legal system’s current jurisprudence on the relationship of children, parents and the state, and even a brief and necessarily incomplete overview illuminates the need for a normative theory to bring order to this chaotic area of the law.

            The earliest cases to focus on conflicts between parents and the government established parental prerogatives as constitutionally protected privacy rights.  In 1923, Meyer v. Nebraska considered, and overruled, a state law prohibiting parents and schools from teaching children in the German language.  The case was decided largely on First Amendment freedom of expression doctrine.  Pierce v. Society of Sisters, decided in 1925, established the right of parents to remove their children from the public school system.  The decision also upheld the right of the state to mandate education through a particular age, or for a particular number of years.  The Court recognized the right of parents to instruct their children in a manner consistent with their own values and beliefs, but also recognized that society in general and government in particular has a vital interest in assuring an educated citizenry.  Not until Wisconsin v. Yoder in 1972 (and then only in a dissent by Justice Douglas) would there be an explicit recommendation that the interests of the children involved be given any consideration.

            In Prince v. Massachusetts, in 1944, the Court upheld the constitutionality of child labor laws, and penalties for parents who violated them.  The case signaled that parental rights, while still paramount, could and would be limited when socially determined interests of children required such limitation.

            In the late sixties, three cases sent mixed signals about the rights of young people: In re Gault, handed down in 1967, required the state to provide legal representation for children facing criminal proceedings, extending to juveniles a right previously enjoyed only by adults.  The next year, however, in Ginsberg v. New York, the Court upheld a law prohibiting the sale of “girlie” magazines to a sixteen-year-old, over objections based upon adolescents’ free expression rights.  Then in 1969, in Tinker v. Des Moines, the Supreme Court issued the now-famous (and routinely disregarded) edict that children “do not leave their constitutional rights at the schoolhouse gate,” and permitted the plaintiffs to wear black arm-bands to class to express disapproval of the Vietnam War.

            In 1971, retreating from the promise of In re Gault, the Court declined to extend the right of trial by jury to young people. (McKiever v. Pennsylvania).  In 1972, it handed down another case involving the education of young people, Wisconsin v. Yoder.  The Court in Yoder held that Amish parents had First and Fourteenth Amendment rights to withdraw their children from formal schooling after completion of the eighth grade.  The case continues to e widely discussed and analyzed, because it addresses the persistent tension between the free exercise rights of minority religious sects and the interest of the state in fostering civic cohesion and citizenship education.  What it did not address, as Justice Douglas pointed out in dissent, was the possibility that Amish children might have rights distinct from those of their parents that the state might have a duty to consider.

            If parents have often been accorded unreasonably wide latitude over childrearing decisions, the Court has just as steadfastly refused to limit the scope of state interference with children’s liberty interests.  In 1979, in Parham v. J.R., the Court declined to require that a hearing be held before a child could be institutionalized; and in 1984, in Schnall v. Martin, it permitted the “preventive” detention of juveniles said to “pose a risk” of committing crime.  The Court in Schall held that a minor’s liberty interest was subordinate to his “best interests” as the state might define them.

            The trend since 1980 has been to diminish even such children’s rights as the Court had previously established.22  Hazelwood School District v. Kuhlmeier, a 1988 decision, upheld the right of public school officials to censor student newspapers.  In the infamous DeShaney v. Winnebago County Department of Social Services, in 1989, the Court declined to find county social workers liable for severe brain damage suffered by a child at the hands of his father, despite the fact that the agency had been aware of the situation for months, had removed the child from the home at one point, had returned him to the father’s custody and then allowed him to remain despite the father’s noncompliance with required counseling and documented evidence of continued abuse.  The case stands as a stark example of current legal principles favoring the rights of even abusive parents and sharply limiting the state’s affirmative responsibility for the well being of children.

            The 1995 case of Vernonia v. Acton is the most recent of a series of cases considering and substantially restricting the Fourth Amendment rights of youngsters.  Minors may generally be subjected to searches if there is “reasonable suspicion” rather than the higher standard of probably cause, and students may even be searched at random and without any individualized suspicion at all certain school settings.  In Vernonia, the asserted pervasiveness of drug use in the school was held sufficient to justify random, suspicionless drug testing that would clearly e unconstitutional if conducted on adults.

            A comparison of the juvenile justice system with health care law provides numerous examples of the legal system’s ambivalence about the rights and capacities of children.  As prosecutors are waiving more and younger juveniles into adult courts, insisting that they be held legally and morally responsible under adult criminal standards, other courts are tightening parental notification laws based on the assumption that female adolescents are incapable of assuming responsibility for their own reproductive decisions.23  Children’s voices are routinely and legally ignored in medical situations directly affecting them.7  As Minow has noted, there are states in which an 18-year-old can obtain an abortion without parental notice, but cannot legally miss school for a doctor’s appointment without a note.20

            It may be in the abortion context, that these competing considerations are most starkly revealed.  The Supreme Court has attempted to mediate among the values involved by constructing a mechanism by which the states could be informed of a minor’s desire to have an abortion, and could authorize in conformity with that desire without notice to the minor’s parent.  This judicial mechanism signaled the Court’s recognition and protection of children’s constitutional rights, and its willingness to circumscribe those rights in light of children’s particular vulnerabilities, impaired decision-making, and dependence upon their parents.  The Court has recognized a minor’s right to have an abortion, even without parental consent, but has also allowed the state to impose limits intended to encourage intra-familial resolution of the issue.  States have been required to develop a judicial by-pass procedure allowing a minor to establish her maturity in the event that attempts at intra-familial resolution proved impracticable.  This represents a recognition of the (admittedly limited and contingent) rights of children to make certain important personal decisions; but it also opens the door to inconsistencies of application, in large measure because courts are not well equipped to deal with issues of intellectual competency and emotional maturity, and because lack of competency is a convenient proxy for other, more authoritarian, concerns.20

Health Care Decisions and Children’s Rights

            As Woodhouse has suggested, one reason for the inconsistent nature of children’s rights jurisprudence is that U.S. law is forged out of crisis intervention.  The Constitution requires the existence of a “case or controversy,” a conflict implicating real interests and affecting real parties, as a condition to court action.  Advisory opinions are not part of our legal tradition, and if a real case has not forced a court to address an issue, there is no case law on that issue.  As a result, the guidelines we have for allowing children to participate in medical treatment decisions are more suggestive than determinate.

            Probably the most litigated area involving children’s right to self-determination is abortion and required parental notification.  Parental notification laws are an example of legislation directed at politically powerless constituencies, and courts have “reinforced the state’s power to curtail the rights of minors when where it acts in the guise of a protector of minors from their lack of capacity to fend for themselves.”23,p.1127  In addition to the presumed diminished capacity of minors, deference to the integrity of the family is often cited as a justification for parental notification requirements.  While it is true that the due process clause’s liberty interest protects parental authority over children, it is also true that even in cases upholding parental rights the courts frequently distinguish between the rights of the father and mother, suggesting that “family integrity” is a more nuanced issue than proponents of parental notification legislation might recognize.24, 25  

            In order to pass constitutional scrutiny, parental notification laws must contain bypass provisions that allow a young woman to demonstrate that she has sufficient capacity to make an informed and responsible decision.  The guidelines usually applied to determine capacity are very similar to those courts have applied in cases involving general medical care and informed consent.  The older the girl, the more nearly emancipated, the more likely it is that a court will respect her decision.  A typical case is In re Mary P, in which a Queens County, New York, court issued a protective order against a mother who was insisting that her daughter abort.  The girl was fifteen, and wanted to carry her child to term.  The judge ruled that “it is the child who has the right to decide.”  Of course, there is a strong concern when dealing with polarizing issues like abortion that judges will be influenced by their own strong beliefs, and will tend to see as “mature” those adolescents who make decisions they agree with.  In order to guard against that danger, it has been suggested that the burden of proof in such cases be placed on whoever is opposing the minor’s decision.  Parents or others who wish to substitute their judgment for that of the young woman involved should have to demonstrate by clear and convincing evidence (a high legal standard) that the decision is not in the minor’s best interests.23

            In a legal system that accords so much power to parents, courts have been called upon to decide whether parents may give consent to a child’s participation in medical research, or may authorize transplantation of their minor child’s organs, and if so, under what circumstances.  In Strunk v. Strunk, a court allowed parents to consent o the transplantation of a kidney from an institutionalized 27 year old with an I.Q. of 35.  The recipient was his brother, a married university student.  In Hart v. Brown, a court allowed a similar transplant from a healthy 7 year old to her sibling, but only have a searching examination of the risks and motives involved.  In several other reported cases, permission has been denied.26

            A number of courts have had to weigh the rights of terminally ill minors against the wishes of their families and the advice of medical professionals.  A case in point was fifteen-year-old Benny Agrelo, born with a malfunctioning liver.  He had a transplant at eight that failed when he was thirteen.  Following another transplant and treatment with experimental drugs, he could not lead a normal or comfortable life.  When he refused to continue his drug regimen (with his parents’ concurrence), his doctors went to court to compel treatment.  In a widely reported case, the judge ruled that Benny was capable of informed consent, and he died as he had wished.14

            Informed consent implies a right of informed refusal.  Competent adults have that right, not only under common law, but as a part of their constitutional right to privacy.  That right, however, has not been generally extended to minors, due both to their presumed incapacity to make such decisions and to the intervening rights of parents.14  Over the last several years, however, some courts have begun to extend the right to refuse treatment to “mature” minors.  The burden of proof is on the minor to demonstrate maturity.  Standards applied by different courts differ, with some using a common-law “rule of sevens” to support a presumption that children over fourteen are competent, and others taking a case-by-case approach.  Two decisions, one issued in 1989 and the other in 1990, illustrate some of the complexities of these cases.  In In re E.G., a seventeen-year-old Jehovah’s Witness refused transfusions necessary to save her life.  The trial court disregarded her wishes, despite finding her to be mature and informed.  That decision was overturned by the appeals court, which ruled that her right to make her own decision must be balanced against the importance of preserving life, the need to protect the interests of third parties (usually parents), society’s interest in preventing suicide, and maintenance of the ethical integrity of the medical profession.  In this case, the mother supported the decision, and the balance was struck in favor of respecting the minor’s right to self-determination.  In re Long Island Jewish Medical Center, decided the following year, is an example of the fact-sensitive nature of such inquiries.  As with E.G., the case involved a seventeen-year-old Jehovah’s Witness (in fact, he was only seven weeks shy of his eighteenth birthday).  His parents, too, supported his decision to refuse transfusions.  But the evidence demonstrated that he was highly dependent, that he considered himself still a child, and that his connection to the religious beliefs compelling his decision was tenuous, at best.  He repeatedly testified that it wouldn’t be “his” sin if the Court ordered the transfusions.  The Court found that he was not a “mature minor,” and that he lacked legal capacity to make the medical decisions involved.

The Issue of Children’s Competence

            The body of scholarship on children’s competence is sparse indeed, with much theoretical or expository posturing, but little in the way of empirical study.  Realizing the limitations and recent challenges to the theories of Jean Piaget, we limit our discussion to his theoretical framework because the few studies that have been done have used his concepts to inform their inquiry. From a theoretical perspective, Piaget describes the ability to posit general logical rules through internal reflection, that is, hypothetico-deductive reasoning as the capacity which evolves during the formal operational stage of development.27  During this stage abstract thinking appears and when faced with a problem a child will think of all the possibilities and outcomes, including those that are not obvious, weight the alternatives, and test them against reality in an orderly fashion.  In addition to voluntariness, this is precisely the skill that is required in the process of informed consent.  The presence of formal operational thought is necessary in order for one to be able to appreciate the nature and consequences of a proposed treatment, to reflect on these rationally, and to reach a reasonable decision.28, 29  Extensive evidence exists suggesting that developmental stage is a more accurate determinant of cognitive ability than is chronological age, thereby suggesting that at least some persons below the age of 18 are intellectually capable of rendering truly informed consent to treatment.  By the same token, some persons over the age of 18 do not reach the formal operational stage – a finding that has been substantiated by research.30, 31

            There are only a few major attempts to apply cognitive developmental concepts to analyses of minors’ capabilities to make independent decisions about their own health care.  In the case of Grisso and Vierling, who examined the extant research in developmental psychology, they concluded that the moral and intellectual maturity of most 15 year olds was usually at least equal to that of most adults and that most 11 to 14 year olds would be capable of consenting in some selected instances.32  In 1982, Weithorn and Campbell empirically tested the law’s presumption about the competence of minors to make decisions affecting their own health care.  The study compared the performance of persons ages 9, 14, 18, and 21 on a measure developed to operationalize legal standards of competency.  Their findings supported predictions of Piagetian concepts of cognitive development.  Minors aged 14 were found to demonstrate a level of competency equivalent to that of adults.  Younger minors aged 9, however appeared less competent than adults.28

            Only one reported study exists to date that considered the issue of informed consent and children’s ability to participate in a clinical trial.  Lewis and Lewis found that after explaining the nature of the research and its risks and benefits, that children ages 9 to 12 years were capable of understanding the process and consequences of participation.33

      Despite there being little empirical data establishing competence and the capacity to engage in decisions, there is little doubt that nervous systems and cognitive structures mature. That maturation and the acquisition of stage salient competencies may theoretically be attenuated by certain factors, such as physical injury or exposure to noxious environmental influences, nevertheless maturation proceeds incrementally.  The law finds it convenient to specify age cutoffs and abilities are presumed to correlate with those age cutoffs.  But neither developmental theory nor empirical evidence supports this position.  Clearly both predict and demonstrate that children who at one time cannot comprehend the facts and issues on which consent must be granted do become able, or at least as able as adults, by some time in their adolescence.

Ethical Practice Within the Confine of the Conundrum

            One might well inquire what this lengthy discussion of children, their psychosocial competence and their legal rights has to do with ethical practice of health care professionals in the U.S.  All of the preceding discussion relates to the nature of the relationship and is built on trust.  Patients trust professionals and entrust themselves – their bodies and well being – to the professional.  Participatory rhetoric notwithstanding, this is an unequal relationship at best, and patients are unavoidably situated within various forms of vulnerability and uncertainty with respect to this relationship.34  The bioethicist Edmund Pellegrino underscored this uneven power distribution when he wrote that patients are “condemned to a relationship of inequality with the professional healer, for the healer professes to possess precisely what the patient lacks – the knowledge and the power to heal.”35, p. 161  

            Given this relationship asymmetry, professionals are under a special obligation to be strictly at the service of patients and to use their power in the interest of their well being.  In the case of children, this obligation is more daunting in that children constitute a special class of vulnerable patient.  They generally do not initiate the professional relationship and they are disempowered because of their presumed incompetent status under the law.

            To be sure, it does not take very long to identify a series of decisions that ought not to be left to a child.  Irreversible surgical procedures are one example of such decisions.  But by the same token, parents may deprive children of rights and in other ways exercise authority over children that would be impermissible in other contexts between citizens.  One example is the situation that occurs when a child is critically ill and the only potentially hopeful means of saving the child is to remove a kidney for a transplant from his healthy sibling.  Such a dilemma is bound to provoke moral distress in the thoughtful practitioner who sees a child experiencing coercion, albeit benign coercion.  The child in this instance experiences both impotence and powerlessness against a coalition of adults acting in traditional adult roles.

            As evidenced by the few studies available on the subject, much empirical work remains to be done to further study children’s competency.  Nevertheless a foundation for ethical decision making already exists for health care professionals.  Principles of beneficence and nonmaleficence are central to the ethical standards regulating health professionals.  The maxim primum non nocere — above all do no harm — is at the core of the Hippocratic oath and foundational to Western medicine.  In the American Nurses’ Association Code of Ethics, nursing the very first provision states: “The nurse provides services with respect for human dignity and the uniqueness of the client, unrestricted by considerations of social or economic status, personal attributes, or the nature of the health problems.”36

            An ample body of psychological literature points to the positive value of allowing humans to exercise choice.  Moreover, patient choice appears to be an important determinant of treatment success.37  Thus, both medical and nursing ethics point strongly in the direction of recognizing the right of persons to be given choice and sufficient information to make reasonable choices, to participate in treatment decisions and the be engaged in the process of their care.

Conclusion

            What are we to conclude from this discussion?  It is obvious to anyone who has seriously approached the issue of children’s rights that it is a nuanced and multi-dimensional issue.  It is also one that spans the paradigms of ethics, social and developmental sciences, and the law.  Our codes of ethics suggest that professionals ensure that children, as human beings, should have the opportunity to be informed and to consent to medical treatment.  Social and developmental sciences suggest that children have incremental capacities for decision making that depend on a number of ontogenetic and ecological factors.  Yet, for the most part the highest court in the U.S. has little faith in minors’ competence and capacity to make informed decisions.

            Children’s capacity for decision-making and the exercise of meaningful autonomy over his or hr body depends upon socially constructed definitions, observations, attitudes and values.  Unfortunately, these definitions, observations, attitudes and values are not informed by hard data.  In fact there is a clash between the sciences and the law, with the law relying more on logical analysis and the sciences relying on empirical analysis.  This is unfortunate; both law and public policy would be better served if this disconnect were bridged, and legislation were based on a better grasp of empirical data.  The current situation leaves the professional in having to decide what is morally acceptable and yet legal at the same time.

            In addressing this issue Rodham suggests that legal competency be presumed unless proven otherwise and she called upon the law to be as discriminating in its application to children as it is with adults and argued that children should be presumed legally competent unless proven otherwise.38  Wilkins, among others, has argued that the jurisprudence of children’s rights rests upon questionable presumptions about capacity, and the issue of capacity is at the heart of much of the difficulty courts have with these cases.37  As one judge has observed,


“While mature children may not have the political autonomy that an adult possesses, they still possess the personal autonomy possessed by all human beings.  The specter of a judge ordering such a drastic intrusion into the personal autonomy of a cognitively competent, socially mature adolescent, who for personal or religious reasons chooses to reject treatment, ultimately repulses most individuals.  Power has its limits.  Our society has recognized those limits where adults are concerned.  While the result in children’s cases is not altogether satisfying, the alternatives are worse.”39, p. 1914


As a practical matter, ignoring children’s strong preferences may well undermine the enforceability of a court order.  Noting that the rhetoric of “best interests” provides inadequate guidance to jurists, Mlyniec makes several recommendations for ethical decision-making: Judges should be aware of the importance of good legal representation in these cases; they should be familiar with scientific research and child development theory; and they should be required to demonstrate expertise about children before trying cases involving them.  Judges should be willing to evaluate cognitive competence, particularly in juvenile criminal proceedings where children under fifteen rarely understand their rights and I.Q. will affect their ability to do so.  And they should look carefully for evidence of undue influence.  Subject to those variables, Mlyniec gives no weight to the preferences of children under ten, and applies a refutable presumption favoring the preferences of children over fourteen.  Whatever the age of the child, however, Mlyniec is adamant that the child should be heard.39

            We suggest a similar approach to health care professionals concerned with the issue of children’s voice in decision making.  Difficult cases such as the bone-marrow donation dilemma will be rare, but in view of children’s vulnerability and powerlessness, professionals have an obligation to empower rather than further disempower children.  Thus we propose no algorithm for health care professionals in their practice with children, but rather urge the adoption of empowerment based practice.  Empowerment suggests that children should be heard, their interests advanced, and their rights determined on a case by case basis that takes context and competency into account.  It suggests that the practitioner, as both advocate and fiduciary, will insure that children have as much information and decision-making power as is consistent with their age and capabilities.

            At the heard of empowerment practice is the idea that professionals value children’s autonomy and uniqueness, no matter their chronological age.  We recognize that the exercise of more mature and informed decision making is necessary in order to protect children’s future as adults, nevertheless, with respect to day to day practice, children should be at least consulted about the major decisions they cannot make independently, such as life-saving chemotherapy.40  They should also have age-appropriate autonomy over matters that they can control, for example who can visit them in the hospital.  Nurses and other health care professionals can make clear to children what is outside their realm of responsibility and what is within their control.

            The United States may or may not ratify the Convention on the Rights of the Child, but the health care professions should not wait for ratification and legal mandate in order to implement the Convention’s central insight: children are individuals whose personhood deserves respect.  Empowerment practice is a demonstration of that respect.

 

Footnote:  In order to prevent redundancy we have used some terms interchangeably.  Interchangeable terms in this article include the words pertaining to young persons who have not attained the status of being legal adults.  In the U.S., unless they are emancipated minors, this is the age of 18.  Equivalent terms in this paper are: child(ren), minors, young people or persons, and juveniles.  When we use the word “adolescent” we mean children or minors between the ages of 13 and 17.

 

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CASES

Brown v. Board of Education, 347 U.S. 483 (1954)

Tinker v. Des Moines, 393 U.S. 503 (1969)

Pierce v. Society of Sisters, 268 U.S. 510 (1925)

Wisconsin v. Yoder, 406 U.S. 205 (1972)

Prince v. Massachusetts, 321 U.S. 158 (1944)

In re Gault, 387 U.S. 1 (1967)

Ginsberg v. New York, 390 U.S. 629 (1968)

McKiever v. Pennsylvania, 403 U.S. 528 (1971)

Parham v. J.R., 442 U.S. 584 (1979)

Schnall v. Martin, 467 U.S. 253 (1984)

Hazelwood School District v. Kuhlmeier, 484 U.S. 260 (1988)

DeShaney v. Winnebago County Dept. of Social Services, 489 U.S. 189 (1989)

Vernonia v. Acton, 515 U.S. 646 (1995)

In re Mary P., 444 NYS2d 545 (Fam. Ct. Queens County, 1981)

Strunk v. Strunk, 445 S.W.2d 145 (Ky. 1969)

Hart v. Brown, 289 A.2d 386 (Conn. Sup. Ct. 1972)

In re E.G., 549 N.E.2d 322 (Ill. 1989)

In re Long Island Jewish Medical Center, 557 NYS2d 239 (Sup. Ct. 1990)

Meyer v. Nebraska, 262 U.S. 390 (1923)