Pediatric bioethical issues are unique because children are not simply little adults. The term “minor” covers an age span that represents a wide spectrum of neuropsychological development which increases the complexity of decision-making in pediatrics, particularly with regards to the minor’s emerging autonomy.
The way we view and treat children today is the result of a dynamic process shaped by centuries-old debates about relevant questions regarding the nature of the child and who has the legal authority to make decisions for the child. Decision-making issues arise commonly within the clinical and research domains; however, minors can also access various services and alternative treatment choices that may impact their healthcare.
Adults with decision-making capacity have been recognized in ethics and the law as having the right to self-determination in healthcare decisions based on the principle of respect for autonomy and bodily integrity. By nature, children do not enter the world as autonomous agents but are dependent on others. Children are not presumed legally competent as moral agents with decision-making capacity, but each child still has dignity and is worthy of respect, for “morally the child is first and foremost an end in herself.”[1] The dependency of children highlights the fiduciary responsibility of both physicians and parents to protect and promote the health-related interests of the child and shifts the moral focus in pediatrics away from autonomy and toward protection.[2] This also raises questions about protections or privileges that should be ethically or legally sanctioned.
As children grow and mature physically, mentally, emotionally, and spiritually, they eventually become separate from their caretakers with their own identity and values. This gradual process, highly individual and context specific, prompts questions regarding when respect for the child’s emerging autonomy should move toward a model of shared decision-making. Where and how to draw the lines regarding decisional capacity and legal authority in healthcare decisions for the maturing child and adolescent and the degree of participation they should have in the decision-making process is an ongoing discussion.
All those who care for children and struggle with ethical choices do so in a complex web of cultural influences and legal boundaries. Children are embedded in families and cultures with worldviews, stories, and frameworks that shape their values and order their lives. This ordering always includes an orientation toward a single (or multiple) source of authority.
One of the more difficult tasks in reviewing the literature on healthcare decision-making in cases involving the maturing child is parsing through the complex history of the attribution of maturity to minors and the vast repository of legal cases and documents. The difficulty is compounded by the regulations concerning minors in various branches of the law and the inconsistencies in federal laws and state rulings. Individuals involved in healthcare or research concerning minors should always be aware that discrepancies exist and familiarize themselves with relevant state laws.
A person is considered an adult and granted the individual rights and responsibilities of adulthood according to the legally determined age of majority, which in most states is eighteen years of age. This has not always been the case and even now differs by state as statutory laws grant adult privileges categorically. Historically, changes in the age of majority have shifted for numerous reasons. Sometimes these changes have been the result of political movements, or they have simply been implemented to streamline procedures of the law. It has been noted that changes in the age of majority have even been based on utility, such as in times of war.[3]
Neither the U.S. Constitution nor the Bill of Rights makes explicit the rights of children or parental rights and responsibilities. Nevertheless, these issues have been addressed through American jurisprudence at the state and federal level.[4] Adjudication of individual cases has had an extensive impact on views toward the maturity, moral responsibility, and legal culpability of minors. Laws governing parental/child rights and responsibilities have covered a wide range of concerns in the law: family law, civil law, health law, and criminal law. The courts have greatly impacted bioethical discourse, but legal opinions have been confounding because they are diverse, overlapping, and inconsistent. The problem often resides in the fact that the clinician seeks to find an acceptable moral solution at the bedside, while the law seeks to provide a judicial construct that will provide a legal solution for all of society.[5] In a pluralistic society, this creates a conundrum for the clinician or researcher who is morally compelled to care for and assess the individual minor’s capacity to participate in the decision-making process and to legally give consent or refuse services. In healthcare, laws or constructs that hamper the clinician’s ability to adequately assess decisional capacity compromise the process of informed consent, nullify the laws’ ethical and legal intent, and can fail to protect vulnerable minors.
Many laws and policies created during the early part of the twentieth century reflected the conviction that the maturing child or adolescent, despite an increasingly adult appearance, was very different from adults and in need of legal protection and moral guidance. Ethically and legally, there was a presumptive understanding that parents were the proper surrogate decision-makers for their children. Four reasons were cited by Allen Buchanan and Dan Brock: 1) “[I]n most cases parents both care deeply about the welfare of their children and know them and [the child’s] needs better than others do”; 2) “[P]arents must bear the consequences of treatment choices for their dependent children”; 3) A “right of parents, at least, within limits, [is] to raise their children according to the parents’ own standards and values and to seek to transmit those standards and values to their children”; 4) “[T]he family is a valuable social institution. . . . [and] must have some significant freedom from oversight, control and intrusion to achieve intimacy.”[6] This was reflected in an opinion by Chief Justice Burger in Parham v. J.R.:
Our jurisprudence historically has reflected Western civilization concepts of the family as a unit with broad parental authority over minor children. . . . The law’s concept of the family rests on a presumption that parents possess what a child lacks in maturity, experience, and capacity for judgment required for making life’s difficult decisions. More important, historically it has recognized that natural bonds of affection lead parents to act in the best interests of their children.[7]
It is important to note that this was not an unrestricted right of parents, for the state claimed a right to protect children in cases of abuse or neglect.[8] In Prince v. Massachusetts the Supreme Court concluded that the State was the child’s parens patrieae (literally “parent of his or her country”). The court stated,
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 that choice for themselves.[9]
Controversy in bioethical discourse and the law revolves around if and under what circumstances the adolescent or maturing child is fully capable of making autonomous healthcare decisions.
It seems obvious that a child does not magically become mature upon turning eighteen. Even in the adult population, it is recognized that decisional capacity is relatively task specific and may fluctuate over time, requiring reassessment as needed.[10] Regardless of these insights, bright lines of demarcation have been used in research, clinical medicine, and in the law to establish thresholds of maturity. For example, the “Rule of Sevens” has been invoked and used within the common law for centuries. The rule presumes a child’s decisional capacity according to a bright dividing line by age:
The Rule of Sevens states, roughly, that children under age seven do not have the capacity necessary to make their own decisions; children from seven to fourteen years of age are presumed not to have this capacity until proven otherwise in individual cases, and children over age 14 are presumed to have capacity to make their own decisions and lead their own lives, unless proven otherwise.[11]
This approach, though broadly utilized, has been criticized for not providing sufficient moral guidance for determining the competence of minors. It is inadequate because it does not reflect the high degree of variability in maturity, decisional capacity, and life experience among adolescents.[12] Paul Arshagouni, pediatrician and attorney, has noted that attempts to render ethical and legal decisions by assessing adolescent maturity according to strict demarcations based solely upon chronological age inevitably lead to false-negatives and false-positives.[13] This is an important point to note because there continue to be efforts to expand the autonomy of minors according to age categories rather than on a case-by-case basis.
Brian Partridge has stated that adolescent decisional capacity is qualitatively different from adults. The questions regarding adolescent decisional capacity and the extension of their autonomy must center on whether their capacity is “effective.” Effective autonomy, that is, “the capacity to choose in ways that effectively support [the adolescent’s] long-range interests,” in the words of Brian Partridge, “appears to depend on their development of the ability, at least in part, to choose non-impulsively and to envisage adequately the future consequences of their decisions.”[14]
Research in the latter part of the twentieth century concluded that by middle adolescence many minors had sufficient cognitive development to handle complex tasks, and some suggested that this was adequate evidence of decisional capacity sufficient to justify the autonomy of minors in healthcare decisions.[15] Subsequently, distinct laws and statutes began to appear that expanded certain kinds of medical treatment without parental consent. A salient point is that these laws gave the appearance of acknowledging the minor’s competence based on decisional capacity, but in reality they were marginally connected. In this regard, the nature and scope of these laws has added to confusion in ethics and the law.[16]
Five categories exist in which a minor can legally make autonomous healthcare decisions:
If one is to truly do justice to the concept of respect for the developing autonomy of the maturing child or adolescent, one must ensure that the necessary conditions are met. Early studies of decisional capacity based solely on cognitive development were misleading because other factors greatly influence the effectiveness and reliability of the cognitive capacity. Cognitive development lays the groundwork for moral reasoning, but adolescent reasoning abilities do not provide evidence that adolescents are capable of making consistently mature decisions.[20] Longitudinal neuroimaging studies utilizing magnetic resonance imaging have shown that the adolescent brain is far from mature structurally or functionally, and converging data is beginning to show how the brain’s complex maturation process correlates with variances in how adults and adolescents make decisions.[21]
Neuroscientists currently believe that decisions are made through the complex interaction of dual systems within the brain: 1) the socioemotional brain systems, the limbic and paralimbic structures (amygdala, ventral striatum, and medial prefrontal cortex), which develop around puberty, and 2) the cognitive control systems (prefrontal and parietal cortical) which develop gradually through the third decade of life. A necessary factor for mature judgment is the integration of these systems, which is facilitated through a process of pruning and myelination in the brain.[22] Because these systems develop at a different rate an imbalance occurs which correlates with the expression of typical adolescent behaviors such as poor emotional control, difficulty interpreting emotions in oneself or others, susceptibility to peer influence, lack of ability to delay reward, and increased vulnerability to risky behavior. These common behavioral patterns have important implications for adolescent healthcare decisions. Adolescents tend to focus more on immediate benefits rather than the future costs of risky choices and although they are logically able to perceive risks, they may weigh them differently in certain contexts. Brian Partridge has noted there is an important difference
between possessing the capacity abstractly to rehearse the future causal outcomes of current decisions versus possessing the capacity effectively, that is, concretely to envisage and appreciate the significance of the near-term and long-term risks and benefits associated with one’s choices. The capacity simply to rehearse the likely outcomes of decisions may falsely be taken as establishing a minor as having mature decisional capacity.[23]
A great deal of interpretive caution is necessary when assessing the minor in the clinical or research setting. Researchers at Stanford have concluded that adolescents with heightened emotions or states of arousal are more likely to take risks.[24] Neuroimaging has shown that even the presence of peers causes significantly increased activity in the socioemotional brain regions, decreasing the ability to resist emotional and social influences and focus on long-term goals. Clinical assessments of emotional states will in most situations be subjective and determinations of decisional capacity will largely be based on a demonstration of cognitive ability alone.[25] It would be incorrect to assume that emotional states can be adequately bridled in our constantly connected society. The malleable emotions of minors may be transient, turning on one Twitter or Instagram post. Psychometric studies that measure reasoning and understanding in hypothetical settings do not approximate real clinical situations, and interestingly the typical criteria used to assess capacity for informed consent utilizes categories that may only capture cognitive skills. This ignores significant factors that interact with cognition in teens such as the influence of peers, variances in reward systems, impulsivity, less future-orientation, and lack of experience.[26] Those factors are difficult to measure but must be considered in order to properly assess if the adolescent has gained the wisdom, skills, and virtues necessary to make decisions that promote a lifetime of well-being. Some may respond that there are adults that lack these skills. Certainly this is true, but it does not release the clinician, researcher, or parent from their fiduciary responsibility to the developing adolescent.
The use of neuroscience research to shape adolescent health-and-welfare policy and the criminal law has brought about conflicting results. Teens have been viewed as less culpable for crimes and yet paradoxically mature enough to have increased reproductive choices.[27] Good scientific evidence should inform ethical decision-making, particularly in matters related to life altering medical decisions, but translating scientific findings for legal and social policy requires discernment and caution.
It is vitally important to avoid a kind of “neuro-centrism” or “neuro-reductionism” that ascribes all human behavior to neurologic processes in the brain, as it can deemphasize other important contributing factors to adolescent choices and behavior, subsequently having detrimental effects on capacity determinations and dehumanizing the maturing child. Traditionally, the family as a moral entity assumes the responsibility for being the child’s moral agent until such a time as the child has formed their own moral identity, with separate values, beliefs, and life plans.[28] Religious or spiritual exploration is a typical component of an adolescent’s search for mature identity formation. This exploration has significant implications for one’s ultimate values and beliefs, and the content of those beliefs influences bioethical choices.
Religious integrity is more than the expression of sincerely held beliefs. Those beliefs should have become an integral part of the individual’s self-concept or identity manifested over time. Buchanan and Brock have noted that decision-making competence includes the capacity “to have and apply a set of values” so as “to ensure that the individual’s choice is truly in line with his or her conception of well-being, and thus, deserving of respect as autonomous.”[29] Adults are presumed to have this capacity because they have had the time and life experiences necessary to form these abilities and beliefs. Similarly, Lainie Ross has argued that the adolescent’s decisions are based on limited experience, so their decisions are not part of a well-conceived life plan, and they need a protected period in which to develop them and advance their future autonomy.[30]
Developmentally, it has been noted that the adolescent’s capacity to be future-oriented generally occurs late in adolescence (18–21 years), after the development of a sense of identity marked by the refining of moral, religious, and sexual values. Research by Jeffrey Arnett has demonstrated that there is a distinct period described as “emerging adulthood” approximately between the ages of 18–25, which expands opportunities for identity exploration through education, work, and a reexamination of beliefs and worldviews.[31] This research emphasizes the fact that identity formation, with settled beliefs and values, even by age 18, may be a premature assumption. It is doubtful that these observations will or should have any effect on the legal age of majority, but the research highlights the precarious and sensitive nature of decision-making in the maturing child/ adolescent.
Robert Coles, in his noted work on the moral lives of children, found that in striving for independence adolescents may argue for their own authority, yet as they search for meaning in their lives most adolescents have some awareness of their own moral vulnerability. They may yearn for independence but not at the expense of kindred ties. In a culture with progressively fractured families, many youths long for at least one older person to be a moral companion on their journey. The process of moral formation which produces sound decisional agency occurs when moral thinking, the contemplation of right and wrong along with experience, yields to settled values and beliefs.[32] What adult cannot attest to the veracity of that observation?
Bioethical decisions are not made in isolation but are increasingly intertwined with a global community influenced by international laws. Many have put forth arguments in favor of empowering children with more autonomy in decision- making. However, Lainie Ross has argued, “To empower children with the same rights as adults is to deny them the protection they need. It would mean the dissolution of child labour laws, mandatory education, statutory rape laws, and child neglect statutes. It would leave children more vulnerable than they presently are.”[33] A society which does not recognize this vulnerability is of little help to the adolescent endeavoring to work out moral struggles. Those who argue for increased adolescent autonomy may be deaf to the cry of the youth who longs for protection and moral direction.
How do we work through the challenge of balancing protection of the maturing child or adolescent with respect for their emerging maturity/autonomy? In our world of advancing technology, minors will be presented with more options in healthcare than ever before. The stakes are high and our responsibilities are great to both protect and prepare our youth for a future in a brave new world.
A forthcoming article will examine this issue in more detail and consider evolving paradigms including the process of pediatric assent and parental permission in informed consent.
[1] Dena Davis, quoted in Sadath A. Sayeed, “The Moral and Legal Status of Children and Parents,” in Pediatric Bioethics, ed. Geoffrey Miller (New York: Cambridge University Press, 2010), 40, originally found in Dena Davis, Genetic Dilemmas: Reproductive Technology, Parental Choices, and Children’s Futures (New York: Routledge, 2001), 34.
[2] D. Micah Hester, “Pediatric Ethics—Why it deserves special attention,” Practical Bioethics 3, no. 4 (2008), 5, http://www.practicalbioethics.org/files/practical-bioethics/PB_Peds_May2008.pdf (accessed January 16, 2017).
[3] Jonathan F. Will, “My God My Choice: The Mature Minor Doctrine and Adolescent Refusal of Life-Saving or Sustaining Medical Treatment Based Upon Religious Beliefs,” Journal of Contemporary Health Law and Policy 22, no. 2 (2006): 237–239.
[4] Sadath A. Sayeed, “The Moral and Legal Status of Children and Parents,” in Pediatric Bioethics, ed. Geoffrey Miller (New York: Cambridge University Press, 2010), 43–44.
[5] Ibid., 48.
[6] Will, “My God My Choice,” 247.
[7] Parham v. J.R., 442 U.S. 584, 602 (1979), partially quoted in Will, “My God My Choice,” 246.
[8] Ann Eileen Driggs, “The Mature Minor Doctrine: Do Adolescents Have the Right to Die?” Health Matrix: Journal of Law-Medicine 11, no. 2 (2001): 687–717.
[9] Will, “My God My Choice,” 248–249 quoting Prince v. Massachusetts, 321 U.S. 158, 166 (1944).
[10] Aviva L. Katz and Sally A. Webb, “Informed Consent in Decision-Making in Pediatric Practice,” Pediatrics 138, no. 2 (August 2016), doi:10.1542/peds.2016-1485, http://pediatrics.aappublications.org/content/pediatrics/early/2016/07/21/peds.2016-1485.full.pdf (accessed January 16, 2017).
[11] D. S. Wendler, “Assent in Pediatric Research: Theoretical and Practical Considerations,” Journal of Medical Ethics 32, no. 4 (2006), 229–234.
[12] Douglas S.Diekema, Mark R. Mercurio, and Mary B. Adam, eds. Clinical Ethics in Pediatrics (Cambridge: Cambridge University Press, 2011), 8.
[13] Paul Arshagouni, “‘But I’m an Adult Now . . . Sort of’ Adolescent Consent in Health Care Decision- Making and the Adolescent Brain,” Journal of Health Care Law and Policy 9, no. 2 (2006): 332–334.
[14] Brian Partridge, “Adolescent Psychological Development, Parenting Styles, and Pediatric Decision Making,” Journal of Medicine and Philosophy 35, no. 5 (2010): 520.
[15] Katz and Webb, “Informed Consent,” 9.
[16] Doriane Lambelet Coleman and Philip M. Rosoff, “The Legal Authority of Mature Minors to Consent to General Medical Treatment,” Pediatrics 131, no. 4 (2013), 786.
[17] Driggs, “The Mature Minor Doctrine,” 691.
[18] Will, “My God My Choice,” 256.
[19] Coleman and Rosoff, “Legal Authority,” 786–787.
[20] Laurence Steinberg et al., “Are Adolescents Less Mature Than Adults? Minors’ Access to Abortion, the Juvenile Death Penalty, and the Alleged APA ‘Flip-Flop,’” American Psychologist 64, no. 7 (2009): 583–594.
[21] Jay N. Giedd, “The Teen Brain: Insights from Neuroimaging,” Journal of Adolescent Health 42, no. 4 (2008): 335.
[22] Katz and Webb, “Informed Consent,” 7.
[23] Brian Partridge, “The Mature Minor: Some Critical Psychological Reflections on the Empirical Bases,” The Journal of Medicine and Philosophy 38, no. 3 (2013): 291.
[24] Frances E. Jensen and Amy Ellis Nutt, The Teenage Brain: A Neuroscientist’s Survival Guide to Raising Adolescents and Young Adults (New York: HarperCollins Publishers, 2015), 103–114.
[25] Tomas J. Silber and Abigail English, “Ethical and Legal Issues in Adolescent Health Care,” Adolescent Medicine: State of the Art Reviews 22, no. 2 (2011): 219.
[26] Ibid., 216–218.
[27] Laurence Steinberg, “Does Recent Research on Adolescent Brain Development Inform the Mature Minor Doctrine?” Journal of Medicine and Philosophy 38, no. 3 (2013): 256–258.
[28] Lainie Ross, Children, Families, and Health Care Decision Making (Oxford: Clarendon Press, 1998), 20–34.
[29] Will, “My God My Choice,” 243–244.
[30] Ross, Children, Families, and Healthcare Decision Making, 61.
[31] Jeffrey Arnett, “Emerging Adulthood: A Theory of Development from the Late Teens through the Twenties,” American Psychologist 55, no. 5 (2000): 469–480.
[32] Robert Coles, The Moral Intelligence of Children: How to Raise a Moral Child, 1997 (Reprint. New York: The Penguin Publishing Group), 135–170.
[33] Ross, Children, Families, and Healthcare Decision Making, 4.
Elizabeth Hensley, “Paradigms of Decision-Making with the Maturing Child or Adolescent,” Dignitas 24, no. 1 (2017): 1, 4–8.
