Dennis Lindberg’s case is unusual in some respects, but surprisingly not as to the most provocative point that for some in the medical community, when children turn 14 or are perceived to be mature, they may be respected as autonomous decisionmakers whose voice either supersedes or is respected alongside that of the adults—including parents and doctors—who are otherwise responsible for their care.Footnote 2 Isolde Raftery, the principal reporter on the Lindberg story, has observed that the doctrine that allowed the result in Dennis’s case “has expanded” beyond religiously-motivated requests, to cover a broad range of important medical decisions, including “to allow trans teens to take hormones and girls to get abortions without telling their parents.”Footnote 3 Some of this is consistent with law in a few jurisdictions which establishes “maturity” or a certain age as the basis for medical decisionmaking rights. Mostly, though, this trend on the ground flies in the face of well-established law on the books—including the constitutional law of parental rights and the web of related state family, torts, contracts, and maltreatment law that reflect the widely and deeply- held norm that parents speak for their minor children.
This Article describes this formal law and the contrary trend and makes recommendations for reforming both law and medicine accordingly.Footnote 4 While there is a lot of writing in the medical and bioethics literatures on decisionmaking in pediatric settings,Footnote 5 and a few articles in the legal literature on aspects and applications of the mature minor rule,Footnote 6 this Article looks at the combined literatures thoroughly to examine adolescent medical decisionmaking rights in general medical settings. Specifically, it describes and compares formal decisionmaking law to everyday practice in this area, and attempts to sort out the implications of the existing dichotomy for both professions, including for their practical and aspirational norms. Finally, it is the first in the legal literature to introduce Dennis Lindberg’s extraordinary case, which we feature as an illustration of adults abdicating their traditional legal responsibilities to children, but which raises numerous, important legal and political questions that call for additional attention and perspectives.
Part II describes the “law on the books,” including the federal constitutional law rule that parents make their children’s medical decisions and its public health and individual health and status exceptions. It then focuses on the individual health exception that is the mature minor rule. The genesis of the mature minor rule in the United States Supreme Court’s adolescent reproductive autonomy cases and its alternative sources in the common law of responsibility for torts and crimes are discussed in this context. This part concludes with an up-to-date survey of the jurisdictions that have adopted and retained the mature minor rule in some form. The survey shows that as of 2021, it arguably exists in only ten jurisdictions, and there is no apparent trend toward further adoptions.
Part III provides a window into the “law on the ground” and the apparent trend in that context of allowing adolescents important decisionmaking rights. Our goal was to understand the sources and contours of this phenomenon, not its breadth or pervasiveness;Footnote 7 thus, based on a literature review, interviews, and an evaluation of changing guidance from the American Academy of Pediatrics (“AAP”), our research and analysis indicate that adolescent medical decisionmaking rights tend to arise as a result of three different, often overlapping phenomena: (1) mistakes and nullifications of law, (2) patient non-adherence, and (3) evolving medical culture, including evolving medical ethics norms and the development of shared decisionmaking models. It is especially significant that adolescents have been afforded de facto medical decisionmaking rights in life and death situations where their voice is least likely to be legally relevant. Further, these rights are afforded in circumstances and ways that suggest medicine’s complicated relationship with the law’s fiduciary model of parental authority.
Part IV returns to Dennis Lindberg’s case, detailing how these three phenomena—mistakes and nullifications of law, concerns about patient non-adherence, and evolving medical culture—operated to afford Dennis decisionmaking rights he did not have in formal law at the same time they deprived him and his parents of explicit legal protections. Our legal analysis of his case complements existing work in the medical and bioethics literatures and in the popular press.Footnote 8
Part V uses the analyses in Parts III and IV to develop recommendations for medicine and law. We suggest that the medical community develop a better understanding of the outer bounds of its decisionmaking authority as well as of the merits of maintaining institutional rules that curtail the discretion of individual physicians and provider groups to operate outside the boundaries of widely-held medical and social norms. And we suggest that law needs to do more to translate and disseminate its inflexible rules for those in medicine who are governed by their terms, including to distinguish law from medical ethics, as well as to notice and process the implicit critique from medicine about how formal law conceives of and treats adolescent patients. Because this critique is consistent with developments and commitments in related areas, it suggests the kind of normative shift that can be a foundation for law reform.
The Article concludes with reflections on how these recommendations might guide the development of a new model for adolescent medical decisionmaking that reconciles the law and the norms that animate its terms with medicine’s particular professional and ethical commitments to patient care. As Isolde Raftery noted, the phenomena that drove the result in the Lindberg case have had effects well beyond his particular facts, to include adolescents in a range of circumstances not formally covered by law.Footnote 9 From adolescents seeking vaccinations against viral diseases to teens needing reproductive health care to trans youth seeking gender affirming care, these circumstances should be brought into the light and regulated on the books so that adolescents are afforded both medical decisionmaking rights and protections consistent with their evolving capacities.Footnote 10
II. THE LAW ON THE BOOKS
The “law on the books” refers to formal law as it is found in federal and state constitutional, statutory, and regulatory law, as well as in the decisions of the state and federal courts. The scope, details, and limits of adolescent medical decisionmaking rights are the negative of their parents’ medical decisionmaking rights, which are found in federal constitutional law and in state common and statutory law. Focusing on its application to medical decisionmaking, this Part of the Article first describes the constitutional doctrine of parental autonomy and the web of state law that both reflects and is reflected in that doctrine. It then summarizes the standard public and individual health exceptions before turning to a close examination of the mature minor rule. Our principal goal is to make clear that the applicable law is not only to be found in state cases and statutes, but also in federal law through which state law must be read; and to provide the reader with the details of that integrated legal scheme.
A. Parental Rights Footnote 11
It is long and well established in federal constitutional law that among the bundle of sticks that make up parental rights is the right of a parent to make their child’s medical decisions; this right supersedes rights and interests others may assert, including those of the child.Footnote 12 Notably, in law a “child” is any person who has not reached the age of legal majority—this includes adolescents. The relevant line is between minors and adults. To the extent that parental rights are limited, it is only by constitutionally valid exceptions.Footnote 13
This law, also known as the doctrine of parental autonomy, is grounded in the First and Fourteenth Amendments, including in the Speech, Religion, Association, and Due Process Clauses. It recognizes that parents have the right to raise their children as they see fit, including to make important decisions for them until they reach the age of majority. In addition to medical decisions, the doctrine of parental autonomy also affords parents plenary rights related to children’s education, religion, and other associations. As the Court explained in Prince v. Massachusetts, “[it] is cardinal with us that the custody, care, and nurture of the child reside first with the parents, whose primary function and freedom include preparation for obligations the state can neither supply nor hinder.”Footnote 14
We are mostly familiar with the practical implications of this doctrine when parents make important decisions about their children’s lives, for example, choosing: where their children will go to school, whether they will be homeschooled, whether they will be raised with a particular religion, and who they will spend time with. But the decisionmaking right also includes the minutiae: whether children have access to the internet or play football, and so on. While the children themselves as well as outsiders may judge these choices, they are within the parental prerogative. The doctrine is rationalized in three ways, as follows.
First, the law holds that children, including adolescents, are not competent decisionmakers. They are held to lack the combination of cognitive capacity and life experience necessary to exercise sound or wise judgment. In law, cognitive capacity (in the sense of neural processing power) is an insufficient basis upon which to rest decisionmaking authority. Adolescence is generally viewed as a period of growth and development, during which the child is preparing for the age of majority—they are adults-in-training.Footnote 15 Once they reach the age of majority, unless there is reason to believe that a particular individual lacks capacity to the point where they should be declared incompetent, the presumption shifts and the law holds that individuals have the capacity and life experience they lacked in childhood. While the age of majority—almost always eighteen—is acknowledged to be an arbitrary line as to any given individual, it is respected for practical reasons.Footnote 16 It is the point at which the law formally recognizes that the child has matured sufficiently enough to can move into their parents’ shoes and become a rights holder themselves, including an autonomous decisionmaker. Whatever informal arrangements parents and children may make beforehand or afterward, the formal handoff of physical custody and decisionmaking rights is at that age.
Second, before children reach the age of majority, the law holds that parents are their children’s best proxy decisionmakers, or their “first best caretakers,” because, among the adults and institutions that might be designated as proxies, parents are most likely to act in their best interests.Footnote 17 This is because they are most likely among this broader group to love their children, to be focused on their survival and success, and to know the facts necessary to make good decisions.Footnote 18
These two rationales are best articulated in the medical setting in the Court’s 1979 decision in Parham v. J.R.:
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… . Most children, even in adolescence, simply are not able to make sound judgments concerning many decisions, including their need for medical care or treatment. Parents can and must make those judgments… . The fact that a child may balk at hospitalization or complain about a parental refusal to provide cosmetic surgery does not diminish the parents’ authority to decide what is best for the child.Footnote 19
Notably, when the law speaks of “best interests” in this context, it does not mean that parents must select the “best” option from an outsider’s perspective focusing only on the child herself.Footnote 20 Indeed, the law expressly rejects the notion that parents should have their proxy decisionmaking rights revoked or replaced on the basis that someone else would make a different or objectively better decision.Footnote 21 Rather “best interests” simply means falling within the broad range of reasonable parenting allowed in a diverse society.Footnote 22
Third, so long as parental choices fall within this broad range,Footnote 23 parental rights are justified on a rights and responsibilities model: rights are granted to parents in exchange for the responsibility the law imposes on them to provide for their children’s necessaries. As the Pennsylvania Supreme Court explained in its 2000 decision in Commonwealth v. Nixon, in which it specifically rejected a parent’s claim that their sixteen-year-old was mature enough to exercise the autonomous choice to forego medical treatment,
[b]y mandating primary responsibility for the child’s wellbeing upon the parents, the legislature has not only acted toward fulfilling its role as parens patriae, but also has recognized that parents have a duty to provide for their children which accompanies the right to raise children with minimal state encroachment.Footnote 24
Citing the Court’s decision in Prince, the Nixon court emphasized that this rights and responsibilities model reflects an exchange between the child’s sovereign “parent” (the government) and natural parent (the legal caretaker) that does not permit the handoff of responsibility, even to an older child.Footnote 25 This responsibility is held in partnership between parents and the state.Footnote 26 The responsibility extends until children reach the age of majority—again, regardless of any individual child’s capacities and experience. As a result, so too do parental rights.Footnote 27
The doctrine of parental autonomy is the law of the land not only because the Supremacy Clause establishes this as a formal matter,Footnote 28 but also—as Commonwealth v. Nixon suggests—because its underlying commitments pervade related areas of both federal and state law. This includes the clauses of the federal Constitution discussed above as well as state family, tort, contract, and maltreatment law. The story in this area is normally one of alignment because there is broad and deep societal commitment to the doctrine across the political spectrum.Footnote 29 As the Alabama Supreme Court explained in a 1990 decision involving a 17-year-old girl,
[i]n such matters as deciding on the need for surgical or hospital treatment, the wishes of young children are not consulted, nor their consent asked when they are old enough to give expression thereto. The will of the parents is controlling, except in those extreme instances where the state takes over to rescue the child from parental neglect or to save its life. Similarly, the right to grant or refuse a medical examination of a child belongs not to the child but to the parents.Footnote 30
Thus, family law conceives of parental custody using some version of the bundle of sticks metaphor from property law, and rests those sticks with the child’s parents; if the parents split, the law parses custodial rights between parents according to the child’s best interests.Footnote 31 “Best interests” in this context is sometimes characterized as the least detrimental alternative with some decisions going to the mother (e.g., choice of religious upbringing), others to the father (e.g., choice of education), and those capable of being jointly administered to both (e.g., physical custody and medical decisionmaking).Footnote 32 A parent who violates the terms and extent of their allocated rights is subject to sanctions.Footnote 33
Tort law generally declines to define reasonable parenting,Footnote 34 and it describes any harmful or offensive touching of a child that hasn’t been authorized by a parent or guardian as a battery.Footnote 35 As is the case with adults, an unauthorized medical touching in particular is considered offensive in law even if it is the standard of care.Footnote 36 Absent an established exception, therefore, a doctor who touches a child without lawful parental consent may be liable in battery.
Traditional contract law, though in flux, generally does not recognize deals made by children as legally binding.Footnote 37 Further, such deals are binding on their parents and guardians only if they are for necessaries the latter would not otherwise have supplied themselves.Footnote 38 As a result, services to a child that are not requested or ratified by a parent may go unremunerated.Footnote 39
Maltreatment law defines neglect as the failure to provide adequately for the child’s necessaries, including necessary medical care; and it defines abuse as any unnecessary physical intrusion that risks or causes important harm.Footnote 40 However state law reads or is interpreted on the ground, this definition is federally prescribed.Footnote 41 Consistent with the constitutional standard, mere adequacy is all that is required—it is presumed that state intervention in the family is not in the child’s best interests unless the child is at risk of serious harm.Footnote 42 While this adequacy rule is generous to parents and thus protective of their rights, it is also undoubtedly a limitation designed to set the outer boundaries of reasonable parenting—again, no constitutional right is absolute.Footnote 43 Finally, children are children in maltreatment law until they reach the age of majority because the law recognizes their vulnerability; they cannot waive their interests in this protection or absolve adults of abuse or neglect.Footnote 44
Taken together, these different branches of state law create a comprehensive web of protections for parental decisionmaking rights, including medical decisionmaking rights. This web also defines the outermost boundaries of parental decisionmaking authority.Footnote 45 Importantly, unlike federal constitutional law whose protections may only apply to state action, federal and state statutory and regulatory law applies to—and as against—both governmental and private actors, including the children themselves.Footnote 46 Thus, public hospitals and their physicians are bound by both federal and state law; and private hospitals and physicians may be conditionally bound by federal law (e.g., if this is a condition of federal funding), and are always bound by applicable state law.Footnote 47 As always, where federal law is inconsistent with state law, the former prevails.
B. General Exceptions to Parental Medical Decisionmaking Rights
No constitutional right is absolute. We live in a legal and political culture that is characterized by a system of ordered liberty. Thus, like all other constitutional rights, parental rights are subject to regulation and exceptions. Parents may lose or have their medical decisionmaking authority curtailed in a number of circumstances that have either already met or presumably would pass constitutional muster.
Aside from custody and maltreatment law which shift decisionmaking authority among adults, there are a number of exceptions which shift decisionmaking authority from parents to their children. The latter fall into two categories:
The first is a set of public health exceptions. Generally statutory and thus broadly applicable, these exceptions are grounded in society’s compelling interest in ensuring that children are treated for infectious diseases and conditions that affect the general welfare.Footnote 48 Depending on the jurisdiction, they may include provisions for children to seek and obtain treatment on their own for drug and alcohol addiction, sexually transmitted infections, and mental health.Footnote 49 Exceptions in this category are sometimes conditioned on a child’s age, but consistent with their basis in protecting the public rather than individual health, they mostly apply unconditionally.Footnote 50
The second is a set of individual health and status exceptions. Both statutory and common law based, so their applicability is variable, these are motivated by society’s compelling interest in assuring that minors who are on their own or whose parents are unavailable or unwilling to consent to necessary care are still able to be treated.Footnote 51 Depending on the jurisdiction, they may include minors who seek emergency care, are emancipated, or who seek pregnancy-related care.Footnote 52 Although this is not always the case, consistent with their terms, exceptions in this category are most likely to be conditioned on a child’s age, cognitive capacity, or maturity.Footnote 53
C. The Mature Minor Rule
The mature minor rule is categorized as an individual health and status exception. In modern law, the notion that mature minors either take or share their parents’ medical decisionmaking rights generally derives from the Court’s adolescent reproductive autonomy decisions.Footnote 54 These decisions establish that pregnant minors who want an abortion, do not want to involve their parents, and can prove their maturity to an alternate (to their parents) adult decisionmaker must be allowed to make the decision themselves.Footnote 55
The factors typically considered by courts as indicia of maturity are consistent with the law’s focus on the combination of cognitive capacity and life experience. Thus, they typically include “age, level of education, success in school, engagement in work or other extracurricular activities, disciplinary issues, and future plans.”Footnote 56 Case outcomes are consistent with the law’s general sense that even older adolescents may lack the necessary combination of cognitive capacity and life experience, as courts often find against minors who seek declarations of maturity.Footnote 57 Abortion is legally available to immature pregnant minors, but it requires either the involvement of their parents or an alternate adult proxy (e.g., a judge) who can evaluate whether the procedure is in the minor’s best interests.Footnote 58
The prevailing rationale for the reproductive autonomy cases is that the decision whether to conceive and bring a child to term is so uniquely impacting and so time sensitive that it is sui generis among medical treatment decisions, thus justifying a departure from the parental decisionmaking right described in Parham. Footnote 59 As the Court explained in Bellotti v. Baird,
[t]he abortion decision differs in important ways from other decisions that may be made during minority… . there are few situations in which denying a minor the right to make an important decision will have consequences so grave and indelible… . Although … deference to parents may be permissible with respect to other choices facing a minor, the unique nature and consequences of abortion make it inappropriate ‘to give a third party an absolute, and possibly arbitrary, veto over the decision of the physician and his patient to terminate the patient’s pregnancy, regardless of the reason for withholding the consent.Footnote 60
Consistent with this rationale and with the doctrine of parental rights generally, in the scheme of federal law, adolescent reproductive autonomy, which also includes the right to obtain contraceptives,Footnote 61 is the only application of the mature minor exception. In other words, to date, the parental right to make children’s medical decisions, affirmed in Parham, remains complete except as to contraception and abortion.
Nevertheless, some states have taken the position that the concept underlying the reproductive autonomy cases may apply more broadly to cover other instances where individual minors can demonstrate maturity to a relevant third-party adult. They argue that if the Court allows adolescents to prove their maturity on a case-by-case basis for reproductive decisionmaking, other adolescents should be able to do the same in general medical settings where the decision is equally or even less important.Footnote 62 The constitutionality of such a general extension has not been tested. However, given the strength of parental rights, their basis in more than children’s immaturity, and the particularity with which the reproductive autonomy exception was developed, especially its sui generis characterization,Footnote 63 it is difficult to imagine that it would be sustained.
It is probably because of this, and an aversion to the abortion exception in particular, that some states have sought to avoid the bright line rule that is the age of majority on alternative common law grounds—for example, by analogy to the Rule of Sevens. This legal state of affairs is particularly likely to be the strategy in more conservative political cultures.Footnote 64 Where it still exists, the Rule of Sevens provides that children between the ages of seven and fourteen are presumed to be incapable of legal responsibility for their torts and crimes, but that children between the ages of fourteen and twenty-one (the old age of majority) are presumed to be capable of such responsibility. Both presumptions are rebuttable by evidence that a particular child either has or lacks relevant capacity. Like the standard for maturity, the evidence required in this context goes to the child’s age, intelligence, and experience.Footnote 65
Although the rationales underlying the treatment of minors who commit torts and crimes are not the same as those supporting adolescent medical decisionmaking rights, the Rule of Sevens has a general appeal. In replacing the bright line age of majority rule with three lines (seven, fourteen, and eighteen or twenty-one), the rule retains the efficiencies inherent in clear lines but reduces the arbitrariness inherent in any single cutoff. Moreover, because the lines are rebuttable presumptions rather than categorical, they provide flexibility when individualized assessments of capacity suggest their inapplicability to a particular child.
As of the date of this writing, only ten states have adopted some version of the mature minor exception to the general requirement of parental consent: Alabama, Arkansas, Illinois, Idaho, Kansas, Montana, Oregon, South Carolina, Tennessee, and West Virginia.Footnote 66
Two states condition the minor’s decisionmaking rights on the capacity for informed consent: ArkansasFootnote 67 and Idaho.Footnote 68 This requires establishing that the patient understands the risks and benefits of proposed treatment and voluntarily accepts or refuses the same.Footnote 69 These states do not require a separate finding of maturity, although a version of the notion is embedded at least in the “understanding (or “knowing") prong of the informed consent standard.Footnote 70
Four states condition the minor’s rights on the capacity for informed consent and maturity: Illinois,Footnote 71 Tennessee,Footnote 72 West Virginia,Footnote 73 and Kansas.Footnote 74 This requires establishing both that the patient understands the risks and benefits of proposed treatment and voluntarily accepts or refuses the same, and that they satisfy the state’s indicia of maturity. In other words, cognitive capacity alone is insufficient, life experience and the resulting capacity for sound judgment are also required.Footnote 75
Four more states use age and/or schooling as a proxy for capacity and maturity:Footnote 76 Alabama (14),Footnote 77 Oregon (15),Footnote 78 South Carolina (16),Footnote 79 and Montana (high school graduate).Footnote 80 These are objective criteria that do not require providers to exercise any judgment themselves about their patient’s maturity or cognitive capacity.
Importantly, where it exists in one of these permutations, the mature minor rule does not appear to be useful to ratify a minor’s treatment refusals in circumstances where the treatment is necessary to avoid serious bodily harm or death. That is, despite one widely distributed decision out of Illinois, In re E.G.,Footnote 81 the rule appears to have developed primarily to allow physicians lawfully to treat older minors who, for various reasons, seek treatment on their own. The law’s commitment to assuring all children receive necessary treatment, which describes the failure to do so as medical neglect, is generally unaffected by the mature minor rule.Footnote 82
Consistent with the legal and political strength of the general rule that parents make their children’s medical decisions, this line-up has remained the same for years.Footnote 83 There is no modern or recent trend suggesting that more states are inclined to adopt some form of a mature minor exception. Thus, in 40 out of 50 jurisdictions, while there may be other grounds permitting children and their physicians to proceed without parental consent, there is no mature minor exception outside of the abortion context.Footnote 84
Some practitioners and commentators have doubted this point, suggesting that the mature minor rule may exist in a jurisdiction in which it has not yet been discussed.Footnote 85 If this is a description of the law on the books, they misunderstand that law. As we explain above, the default in every jurisdiction is that parents have the right to make their children’s medical decisions.Footnote 86 Therefore, it is unlawful to treat a child in the absence of parental authority unless an established exception transfers that authority to someone else. No discussion means that there is no established exception. This is why, for example, the federal government had to require that states develop express exemptions to child neglect law in order to authorize religiously-motivated parents to refuse to consent to certain medical treatments.Footnote 87
Creating a new exception is always a possibility through the courts or the legislature, and scholars periodically argue for new adoptions of expanded versions of the mature minor rule in particular.Footnote 88 Currently, this is especially prevalent among those who are interested in increasing access to medicine for trans youth with dissenting parents.Footnote 89 But unless and until this effort is successful, those who operate as though an exception exists do so in derogation of formal law.Footnote 90
Finally, as already noted, public hospitals are state actors and so are bound to the higher authority of the U.S. Constitution, even in jurisdictions with a state law-based mature minor rule.Footnote 91 That authority makes clear that fit parents have medical decisionmaking rights through the period of their children’s minority, with the exception of the abortion decision which may be made by a mature minor once their maturity is properly established.Footnote 92 Fitness is a legal standard, not a personal point of view. The mature minor doctrine in constitutional law is not broader than this: There is no Rule of Sevens and so fourteen is not a magic age; and there is no exception for minors who can meet the informed consent standard.
III. THE LAW ON THE GROUND
The “law on the ground” refers to the rules that operate in fact, whether they are consistent with formal law or not.Footnote 93 We first distinguished the law on the books from the law on the ground in an article titled The Legal Authority of Mature Minors to Consent to General Medical Treatment. Footnote 94 The article began from the premise that because some in the medical community misunderstood the contours and applicability of the mature minor doctrine, a thorough survey and explanation of the law across the jurisdictions would be helpful.Footnote 95
During the peer review process, one reviewer insisted that we had “raised a ‘strawman argument’ [because] there is no practicing pediatrician holding [the] belief” that mature minors have the right to make general medical decisions.Footnote 96 We agreed that no practicing pediatrician should hold this belief outside of those few states that have some form of a mature minor rule. But he was wrong about his colleagues and thus about adolescent medical decisionmaking rights. Indeed, our motivation for writing in 2013, and again today, is that we continue to encounter important examples to the contrary.
Our focus in that first piece was to make this point and to correct the persistent misunderstanding of formal law by accurately describing it. We have two goals here: First, we aim to provide a description of the etiology, history, and resilience of the misunderstanding. Second, we explore the nature and scope of the de facto rights that flow to adolescents as a result.
A. The History of Adolescent Medical Decisionmaking Rights
The history of adolescents’ de facto medical decisionmaking rights reflects the evolving relationships between physician and patient autonomy, and between medical ethics and law. Our current sense of the nature and extent of those rights is bound up in this history, even as important recent touchpoints also exist. Over time, it is likely that adolescents have had medical decisionmaking rights whenever non-parental adults in a position to facilitate them have allowed their exercise and parents have lacked the will or the cultural capital necessary to enforce their own.
Thus, through the early to mid-1900s, providers of medical services exercised their autonomy in making medical decisions for their patients, including for their pediatric patients. In an informal precursor to the “shared decisionmaking” models that proliferate in this period, they likely did so with variable respect for their patients’ wishes.Footnote 97 Physician “autonomy” has been recharacterized as “paternalism” and mostly rejected on that basis, but the right of doctors to practice in a way that respects their professional priors remains salient in significant aspects of the law.Footnote 98 Formal law in this same period had staked out a strong claim to parental autonomyFootnote 99 and against medical paternalism;Footnote 100 on the ground, however, as we have just noted, parental rights were more theoretical than real for parents who lack the will or capital to intervene.
Beginning in the period following World War II, the bioethics and medical ethics movements sought to turn the promises embedded in this formal law into real patient rights. Specifically, paternalistic exercises of physician autonomy were strongly discouraged in favor of patient autonomy; proxy consent was required when patients were unavailable or incompetent; patients were discouraged from appointing their physicians as proxies; and parents were understood to stand in the shoes of their children through the period of their minority.Footnote 101 Whether physicians adhered to these norms to avoid liability, because they embraced them in substance, or both, the effect was more consistent alignment of ethics and law.
In pediatrics and adolescent medicine, this alignment, to the extent it held, was complicated from the beginning of the Civil Rights Era as a result of challenges by scholars and advocates to the concept of “childhood” as a monolithic period from birth to eighteen during which everyone is an “infant” and thus an “incompetent” in the eyes of the law.Footnote 102 The project to re-imagine “‘adolescence’ as a separate legal category” sought to eliminate, or at least reduce, the instances of de jure discrimination against adolescents that could not be justified on the basis of real differences.Footnote 103 Scholars and advocates sought rights, not just interests, for adolescents, and they imagined that these rights could be enforced as against adults, including their parents.Footnote 104 The notion that parents stand in their children’s shoes for medical decisionmaking purposes might have been in line with then-progressive views about patient (versus physician) autonomy, but it was not in line with this new progressive view that the law should reflect only children’s evolving capacities and not also parents’ political rights.
Adolescents in the United States did obtain some constitutional and state law rights in the process, but aside from those described in Part II above, none reduced the plenary authority of parents to stand in their children’s shoes for purposes of general medical decisionmaking. Indeed, the Court’s 1979 decision in Parham v. J.R., expressly confirming this plenary authority, even as against adolescents, was confirmed just days before the Court’s decision in Belotti v. Baird, which announced adolescent reproductive autonomy as its still singular constitutional exception.Footnote 105 Notably, this legal status quo is unaffected by the United Nations Convention on the Rights of the Child (CRC), which says that children acquire rights incrementally and based on their “evolving capacities.”Footnote 106 The United States has not implemented the CRC because the Convention rejects the American model of parental rights and adolescent legal (in)capacity.Footnote 107
Pediatric ethicists nevertheless continued to pursue their civil rights agenda, in which “evolving capacities” was very much the guiding theme. In the 1980s and 1990s, this effort was designed to push law to reflect their ethics rather than the other way around; if this could not be done on the books, then advocates would make it happen on the ground. We believe this was accomplished by either conscious or mistaken blindness to Court doctrine, by the suggestion that physicians ought not be concerned about the prospect of tort liability, and by an abiding but incorrect sense that the CRC’s evolving capacities standard was somehow actually prevailing law. We have identified two particularly important touchpoints in this context.
The first was the publication of Angela Roddey Holder’s book Legal Issues in Pediatrics and Adolescent Medicine in 1985.Footnote 108 At the time, Holder was counsel for medico-legal affairs at the Yale School of Medicine and a well-respected pediatric bioethicist.Footnote 109 Her book is presented as a treatise on the formal law, but in some respects, it is more accurately characterized as a reflection on what physicians might get away with on the ground—in other words, as the perspective of an advocate for a certain kind of progressive physician. Thus, Holder’s discussion of the mature minor rule is misleading from the start, as she writes, “[t]here are no reported decisions within the past twenty-five years in which a parent recovered damages, even in the absence of a minor treatment statute, for treatment of a child over the age of fifteen without parental consent. This is known as the ‘mature minor rule.’”Footnote 110 She goes on to note that courts are least likely to hold physicians liable for treating adolescents without their parents’ consent when the minor was “near majority” and needed care that was “less than ‘major’ or ‘serious.’”Footnote 111 As we explain below, Holder’s discussion was widely read and cited in both the bioethics community and the medical profession.Footnote 112
The second was the publication ten years later, in 1995, of the AAP Committee on Bioethics statement on Informed Consent, Parental Permission, and Assent in Pediatric Practice” (“1995 AAP Statement”).Footnote 113 Consistent with the deeply held view of its developer William G. Bartholeme that “children are in the process of becoming … ‘intelligent, observant, capable, and responsible persons’ who deserve our utmost respect,” the statement takes the general position that “[p]atients should participate in decision-making commensurate with their development; they should provide assent to care whenever reasonable.”Footnote 114 In general, it envisions a consultative process much like the shared decisionmaking models au courant in this period that involve the patient, physician, and parents.Footnote 115 Throughout the statement, the details about the role and authority of parents and children are imagined very differently from, and sometimes are flatly inconsistent with, formal law. Most importantly, it either misunderstands or rejects the rule that parents are their children’s medical proxies,Footnote 116 concluding that “[i]n situations involving adolescents and young adults, the Academy encourages physicians to obtain the informed consent of the patient … Such patients frequently have decision-making capacity and the legal authority to accept or reject interventions, and, in that event, no additional requirement to obtain parental permission exists.”Footnote 117 Notably, the statement cites Holder for support, as well as others who themselves cited Holder.Footnote 118
According to pediatrician and bioethicist Douglas Diekema, the effect was as at least some advocates intended: the conflation of ethics and law, but this time in the direction ethics was taking rather than as law dictated.Footnote 119 Likely because some of the same advocates were involved, this conflation was facilitated by the federal government which had begun in some instances to require those engaged in pediatric research, including researchers in dual clinical-research settings, to obtain “assent” from children who were deemed capable of providing it.Footnote 120 Although the government itself did not draw the line at the age of fourteen, some bioethicists did and their arguments appear to have been persuasive enough to set research practice standards.Footnote 121 In the course of our investigation, we learned that at least some medical schools may have collapsed their lesson on the federal assent and state law consent requirements into a single slide that featured age fourteen and failed to distinguish between the two concepts.Footnote 122 Again according to Diekema, this may have influenced the view of at least some in the medical community that fourteen in particular has special legal significance as the age at which adolescents become formal or informal participants in medical decisionmaking, either together with or in lieu of their parents.Footnote 123
Regardless of how it developed, this view has been remarkably resilient. The best example is from the AAP itself, which affirmed its 1995 position most recently in 2016, three years after it published our corrective survey of the law in Pediatrics. Footnote 124 This time without any citation or legal support, even to Holder, its 2016 statement announces (incorrectly) that “most states” give mature minors general medical decisionmaking rights.Footnote 125 This marks a shift from its more nuanced, but still erroneous, earlier claim that “many states give decision-making authority (without the need for parental involvement) to some minors who are otherwise emancipated but who have decision-making capacity (‘mature minors’).”Footnote 126
In addition to and perhaps because of the AAP’s repeated error or advocacy, related work–including both academic and instructional literature–often reflects the same mistaken assumptions. Thus, since 2013, we have continued to find medical and legal publications providing both qualified and unqualified advice that adolescents or mature minors–whether they are adolescents or not–have the legal right to make general medical decisions. For example, borrowing from the terms of the mature minor doctrine in other states–but notably not in Ohio law–an Ohio law firm’s website explains that
[a] “mature minor” is someone over the age of fifteen who can show a health care provider that he or she has enough maturity and understanding to make medical care and treatment decisions without parental consent. On a case-by-case basis, a provider must use the same criteria that would be used to determine if an adult is capable of making medical decisions. If the minor is found capable of consenting, a provider must give the minor the same informed consent an adult would receive.Footnote 127
And in March 2018, The American Journal of Bioethics published an article by Aleksandra E. Olszewski and Sara F. Goldkind entitled The Default Position: Optimizing Pediatric Participation in Medical Decisionmaking, in which the authors describe patients who are seven and fifteen as sufficiently mature enough to be included in the medical decisionmaking process, specifically as agents distinct from their parents.Footnote 128 Olszewski and Goldkind were focused on finding ways to include children not to exclude parents from the medical decisionmaking process; still, for the law, which treats fit parents as “one” with their children, this notion – of children as agents distinct from their parents – is provocative.Footnote 129 Their characterization of the children’s maturity and the physician’s proper role in relation to children and their parents was immediately challenged by others in their field, but it was nevertheless important as instruction regarding how some pediatricians think and practice and also about what ideas an influential publication is willing to distribute.Footnote 130
Given this messaging, it should not be surprising that the belief that adolescents have general medical decisionmaking rights is also reflected in practice. Aside from the patients Olszewski and Goldkind described in their article,Footnote 131 the best-known example of this belief is probably Dennis Lindberg, who is featured in our Introductory illustration.Footnote 132 We discuss Dennis’s case in additional detail in Part IV below. The point here is simply that this misunderstanding is not merely academic. It has important real-world consequences.
B. The Circumstances in Which Minors Have De Facto Medical Decisionmaking Rights
Physicians are generally well-versed in the rule that parents stand in their children’s shoes for purposes of medical decisionmaking. As a result, from routine procedures like vaccinations to serious surgical interventions, when parents have the will and the capital – economic or cultural – to insist on exercising their proxy, the nature and scope of parental autonomy in this area is consistent with formal law. When this is not the case, as we detail below, our research and analysis suggest that adolescents have de facto decisionmaking rights in three different, sometimes overlapping circumstances: when the adult actors make mistakes about or choose to nullify the formal law, when the adolescent patients are nonadherent with their clinical protocols, and when medical culture diverges from formal law.Footnote 133
1. Mistakes and Nullifications of Law
Mistakes and nullifications of formal law, specifically about the scope of parental rights and the mature minor rule, provide an important basis for adolescent decisionmaking authority. They typically involve errors and nullifications relating to federal supremacy or federalism and to either poor or overly-aggressive—beyond creative—lawyering. They are made by both medical and legal professionals, although the former tend to make them more than the latter simply by virtue of their different training. Over time, where these mistakes are not corrected, they may become part of practitioner and institutional policy, and, as Dennis Lindberg’s case suggests, they may even become part of the informal law of a locality.
Supremacy errors and nullifications occur when the relevant adult actors do not know or understand the applicability, preemptive status, and effect of federal law in general, and when they do not know or ignore applicable federal law. As we explain in Part II, the Court has held that parents stand in their children’s shoes for purposes of general medical decisionmaking. Parents are not entitled to make “martyrs” of their children, but otherwise, as long as their decisions are at least adequate, they are presumed to be in the child’s best medical interests. It is irrelevant that the child herself and her physician may disagree. The only exception recognized by the Court is for decisions relating to reproductive care. Others that are on the books in state law that we believe would survive constitutional scrutiny include the established public health exceptions and the individual health and status exceptions.Footnote 134 The mature minor rule is not one of those exceptions, and it would be difficult to argue that Parham and Belotti decided and read together do not mean what they say, i.e., that parental authority in this sphere is plenary with the narrow exception of reproductive matters.Footnote 135 State law that provides to the contrary is likely preempted by this doctrine. To the extent a hospital or physician is subject to its terms because they are public institutions or employees, focusing on avoiding eventual tort liability misses this point.
Nevertheless, our research suggests that adult actors on the ground often do not know about or else choose to ignore applicable federal law.Footnote 136 As a result, they operate without the guidance it provides and the requirements it imposes. These go not only to the specifics of decisionmaking authority but also to the framework for understanding related state law. For example, silence on the subject of the mature minor rule in a particular jurisdiction could be misunderstood as permission to proceed as though it existed if one were unaware or else dismissive of applicable federal law. Similarly, inattention to federal law allows adult actors erroneously to think that if a mature minor rule exists for abortion, it also exists for other medical decisions.
Federalism errors and nullifications occur when adult actors mistakenly assume that the law of one state is applicable in another. One state’s law may be influential in a different state that is developing its own policy, but no law is binding precedent unless it is within the jurisdiction. Federalism errors and nullifications also occur when adult actors choose intentionally to ignore this fact about law. Our research suggests that in addition to the state-specific mature minor statutes, two state cases have been principally misused in this respect: Cardwell v. Bechtol out of the Supreme Court of TennesseeFootnote 137 and In re E.G. out of the Supreme Court of Illinois.Footnote 138 Cardwell held that the common law “rule of sevens” applies beyond children’s responsibility for torts and crimes also to afford minors from the age of fourteen a rebuttable presumption of capacity to make medical decisions.Footnote 139 In re E.G. held that a seventeen-year-old Jehovah’s Witness could refuse a lifesaving blood transfusion.Footnote 140 Neither is law outside of their own jurisdiction. Nevertheless, both are frequently cited in medical and bioethics materials as support for a broader application of the mature minor rule.Footnote 141
It is difficult to know whether Cardwell influenced the view that fourteen-year-olds have consent authority or whether it is found and used instrumentally as support for a pre-existing position to the same effect. It is our sense from the overall project that both are probably true. Regardless, when it is used outside of Tennessee as more than evidence of the law in Tennessee—for example as it appears to have been by the AAP and by legal and medical actors in Seattle around the time of Dennis Lindberg’s caseFootnote 142—it is at least a federalism error.Footnote 143
Reading errors and nullifications occur when those who interpret formal law do so either with insufficient training or carelessly. They also occur when attorneys push their otherwise appropriate lawyering role beyond reasonable bounds to reach a desired result. There is a difference between arguing from precedent and mischaracterizing precedent. The former is a litigation skill. The latter is malpractice, but it can still be found where no one challenges the overreach.
2. Clinical Non-Adherence
Clinical non-adherence, sometimes described as non-compliance, is the most commonplace and best understood of the three circumstances in which children, especially adolescents, are afforded the de facto right to make medical decisions. Non-adherence occurs when the patient resists or neglects their prescribed treatment regime, generally of their own accord.Footnote 144 Non-adherence sometimes presents as affirmative choice and action and thus as a paradigm instance of autonomous decisionmaking.Footnote 145 But it is also often characterized by knowing or merely negligent omissions.Footnote 146 We include all forms of non-adherence as examples of decisionmaking here because these same behaviors are well-studied and generally regarded as exercises of autonomy by individuals with capacity.Footnote 147 We also include them because, when adolescents’ choices and behaviors are not countered by their parents or treatment team, they effectively preempt or replace the adults’ decisions. If it is the latter, the adolescents’ decisions become the adults’ decisions, either by default or because the adults ultimately come to embrace them.Footnote 148
Although younger children may sometimes resist when their parents or physicians seek to treat them—struggling against shots and IV lines or refusing to swallow medication are common examples—they can generally be convinced to comply. Where this approach is unsuccessful adults tend not to hesitate to use force and physical restraints to ensure necessary care. In contrast, adolescents are known affirmatively to resist prescribed treatment in circumstances where the adults are unable or unwilling to use force and restraints to ensure compliance. For example, they may not want to submit to prescribed diagnostics or therapy or to take prescribed medication because they do not like the real or perceived side effects. Medications for attention deficit and hyperactivity disorder (ADD/ADHD) and oncology treatments are common examples here.Footnote 149 Adolescents may resist adult authority in these and related contexts as a way of expressing their evolving personhood and autonomy, which is consistent with normal adolescent development.Footnote 150 They may also be motivated by sincerely-held religious beliefs or treatment fatigue.Footnote 151 Although the patient’s motivation matters – treatment fatigue is more likely than perceived social stigma to sway adults – unless they are forced to do so by institutional authorities, the adults involved are unlikely to “tie down” a resistant patient. This is especially likely to be the response if the patient’s condition is chronic or long-term and thus would necessitate multiple such interventions. It appears also to be the likely response where, regardless of his age, the patient presents as physically strong and mature.Footnote 152 In these situations, adolescents are, in effect, in the shoes of adults who refuse to consent to necessary care; their assertion of autonomy is likely to be discouraged but ultimately respected.
Younger children are not generally given the opportunity to neglect their treatment regime, but as with resistance, older children and adolescents are differently situated. By choice or by necessity, adolescents are often in partnership with adults regarding their care. For example, especially as they get older, adolescents are often principally responsible for receiving and taking prescribed medications, attending and engaging with therapy sessions, and foregoing contraindications. This is the case even as adolescents are developmentally prone to mental states, perspectives, and behaviors that suggest they may not be good partners in the treatment effort. Willfully, knowingly, or merely negligently, they are a patient sub-population that is known to skip doses; to minimize the significance of essential details; and to find it difficult to resist peer-related opportunities that are detrimental to their general welfare.Footnote 153 However these acts and omissions are motivated, they often run counter to the treatment plan.
3. Medical Culture
Finally, minors have de facto medical decisionmaking rights when medical culture regarding those rights diverges from formal law. While most medical providers follow the law if they know it – even when they disagree with its terms – some are willing to diverge where their own norms and priors are to the contrary. As Angela Holder noticed many years ago, few parents actually pursue battery or constitutional rights claims in this setting;Footnote 154 as a result, violating formal law is often not a high-risk proposition and medical providers seem to know this.Footnote 155 Two related medical norms are likely to be particularly at issue in this context.
The first is respect for patient autonomy. As applied to pediatric patients, and consistent with the clinical standard of care which takes child development into account, autonomy is gained either incrementally, consistent with normal development, or as of a set age – for example, fourteen – as capacity for informed consent solidifies.Footnote 156 Thus, medical professionals working with adolescents may see the cognitively capable child as a person in their own right who is not necessarily well-represented by their parents or guardians. The concept of the child and the parent-child relationship reflected in Parham v. J.R. is foreign in this setting, both in its view that all children under the age of majority are legally immature medical decisionmakers who lack legally cognizable autonomy, and in its presumption that parental decisions are in their children’s best interests even when they do not reflect objectively acceptable views about those interests.Footnote 157 If the child can understand the nature of the treatment including its risks and benefits, is capable of participating in treatment discussions, and is not under apparent duress, their autonomy should be respected, again even as against their parents.Footnote 158 Respect for autonomy is not absolute, of course. In clinical practice, including in clinical ethics deliberations, autonomy is almost always balanced against beneficence.Footnote 159 This is perhaps particularly true in pediatrics where, at the end of the day, adults do get to decide whether they listen to the child. Still, respect patient autonomy stands as an important medical norm, perhaps especially in research hospitals where the practice of satisfying the federal government’s assent rules for pediatric research may come to be the de facto governing standard in purely clinical contexts.Footnote 160
The second is the modern preference for shared decisionmaking. This model comes in various forms but the general principle is that decisions about treatment courses are not made by physicians alone (either as fiduciaries or as paternalistic actors) or by patients alone (as entirely autonomous consumers of medical services), but rather through a collaborative process that respects and engages both the physician’s experience, expertise, judgment, and ethics, and the patient’s knowledge, requirements, and goals.Footnote 161 As applied in the pediatric setting, consistent with pediatric patient autonomy norms, the shared decisionmaking model often seeks to include the child “at the table” alongside the relevant adults, especially as she matures and her capacities evolve. Depending on the circumstances and how it is applied, this model can run counter to the law’s concept of the parent and child as one, with the parent speaking for the child.Footnote 162 Even if it represents an outlier version, the shared decisionmaking model described by Olszewski and Goldkind is illustrative of this disconnect as it sees even a young child who expresses mature tendencies as a patient to be consulted separately from their parents.Footnote 163 In this respect, their version of the model is also consistent with the way the medical team operated in Dennis Lindberg’s case, which we discuss next.
IV. THE DENNIS LINDBERG CASE
Dennis Lindberg died on Wednesday, November 28, 2007, of complications from cancer.Footnote 164 Specifically, he succumbed to complications from acute lymphoblastic leukemia.Footnote 165 But in our opinion, he also died because his aunt, who was his caregiver at the time, had encouraged his very recent religious conversion and, throughout the period of his hospitalization, continued actively to insist that he not be transfused with human blood products.Footnote 166 His parents, who were apparently methamphetamine users and lived in a different state, lacked the financial and cultural capital effectively to assert their rights when they were finally alerted to his situation and tried to intervene.Footnote 167
The political and medical cultures of the place in which he ended up also, in our opinion, contributed to Dennis’s death. Unlike Idaho, where Dennis had previously lived with his parents, Seattle is a multicultural city where tolerance of religious and cultural differences runs especially deep, including within the medical community and the local division of Child Protective Services (CPS).Footnote 168 This culture of tolerance apparently joined with the medical team’s professionally engrained respect for adolescent medical decisionmaking to create a particularly deferential environment in which a medically sophisticated guardian, her apparently convincing ward, and their faith-based entourage together managed to be atypically persuasive.Footnote 169 The hospital’s interest in not being involved in litigation with the family may also have been a factor.Footnote 170
The claims throughout were that it was Dennis’s own decision to forgo standard oncology treatment and that this decision had to be respected because he was fourteen and thus presumptively mature.Footnote 171 But the hospital never undertook a formal or independent evaluation of his maturity—when asked for this evaluation by CPS, consistent with what that agency believed to be the legal requirement in the state of Washington, the hospital’s psychology department indicated it did “not have the tools for such an assessment.”Footnote 172 The hospital did put Dennis’s decision through a version of a shared decisionmaking process which included an ethics consultation on November 13,Footnote 173 followed by a conference on November 21 – seven days before he died – at which his treatment team, the ethicist(s) involved in the consult, and hospital counsel together discussed his case and ultimately determined both to respect Dennis’s decision and, relatedly, not to characterize the situation as medical neglect.Footnote 174 Additional factors cited for the decisionmaking team’s conclusions were that Dennis was adult-sized despite having just turned fourteen and that his doctor worried that Dennis might have to be physically restrained if transfusions were ordered over his objections.Footnote 175 In other words, respect for children’s evolving capacities and fealty to a shared decisionmaking model reflecting a local culture of tolerance apparently combined with the prospect of patient non-adherence to yield a result out of the hospital to allow Dennis to die.
Ultimately fatal in our opinion, however, were the numerous errors and nullifications of formal law that ensured the usual legal safeguards did not operate in Dennis’s case. Consistent with formal hospital policy, which was in this case abandoned by its keepers, those safeguards provide that medical decisions are made by parents or legal guardians until children reach the age of majority, not by the children themselves. If those adults are unavailable or refuse to consent to necessary, lifesaving care, the decision is taken from them and consent is provided by an alternate guardian who will make the consent decision in their place.Footnote 176 Life and ensuring children make it to the age of majority are the overriding goals. In no circumstances does formal law permit a team of responsible adults to stand by and watch a child degrade over the course of a month in a hospital bed when the standard of care would almost certainly have saved his life.
“Yes” is the right answer to Isolde Raftery’s original question, “When a 14-year-old chooses to die because of religion, can anyone stop him?”Footnote 177
We begin the legal piece of this story where we first took it up, as part of our 2013 fifty state survey of the law on the right of adolescents to make general medical decisions.Footnote 178 In that context, we established which states have mature minor rules and what they look like. Washington did not come up in this survey as a mature minor state.Footnote 179 That is, there is no statute, regulation, or case that provides that it is. Our assessment was and remains consistent with other fifty state surveys on the same issue.Footnote 180 It is our opinion that no lawyer applying standard legal research methodologies would identify Washington as a mature minor state.Footnote 181
Nevertheless, following the publication of the results of our survey, we learned from a hospital social worker at our home institution that colleagues in Seattle had been instructed that, in Washington, mature minors are entitled to make their own general medical decisions. We tracked this view to a flyer entitled Providing Health Care to Minors under Washington Law: A summary of health care services that can be provided to minors without parental consent. Footnote 182 The flyer includes a table that lists eleven different scenarios in which “unemancipated minors” may seek medical attention in the absence of their parents.Footnote 183 Beside each scenario, the table indicates whether parental consent is or isn’t required; and then it provides the legal basis or support, generally a statutory provision, for this indication. We were able to locate two older iterations of the flyer.Footnote 184 Beside the scenario “non-emergency medical services,” both assert that the mature minor rule is applicable in Washington. The earlier flyer, dated March 28, 2006, doesn’t include legal support for this proposition; indeed, it is the only one of the eleven scenarios for which this is the case.Footnote 185 The later iteration of the flyer, dated November 5, 2007, fills that void with a citation to a 1967 decision out of the Washington Supreme Court, Smith v. Seibly. Footnote 186 We do not know whether the absence of this citation in the earlier version was inadvertent or intentional, but it is noteworthy that the void was filled just three days after Dennis was admitted to the hospital when his aunt was pressing, through the social worker assigned to his case, to secure Dennis’s authority to make his own decisions.Footnote 187
In any event, the problem is that Seibly is not on point and does not support the proposition that unemancipated mature minors can make their own general medical decisions. In fact, the case does not discuss the mature minor rule at all. It is a standard emancipation case, affirming that an eighteen-year-old married man and father of one, who lives apart from his parents, works outside of the home, and supports himself and his family financially, is entitled to make his own medical decisions.Footnote 188 As both iterations of the flyer otherwise make clear, emancipation is a non-controversial, well-established basis, separate from the mature minor rule, for granting medical decisionmaking authority to adolescents who meet these independence criteria.Footnote 189
We assume that those who developed the flyer understood that emancipation and the mature minor rule are separate legal bases for adolescent medical decisionmaking because they introduce their table with the note that it is designed to provide information about the circumstances in which “a single unemancipated minor can receive treatment without parental consent;” and they go on to distinguish the legal rights of emancipated and unemancipated minors.Footnote 190 We also assume that those who developed the flyer knew that Seibly was an emancipation decision because they used its language, verbatim, to explain how a practitioner can determine whether a minor is “mature,” even though the case itself uses this same language to explain how a trier of fact can determine whether a minor is emancipated.Footnote 191 It is our opinion that citing to Seibly as support for the mature minor rule was one of three things: sloppy lawyering, overzealous advocacy amounting to overreach, or an outright (albeit disguised) nullification of law.Footnote 192
Regardless, because this move was apparently not checked at its origins and the flyer was widely distributed, especially within the hospital social work community, many people in Seattle and beyond came to believe that Washington is a mature minor state.Footnote 193 As of this writing, the error either remains to be, or has only recently been, cured. For example, Wikipedia cites Seibly and the 2007 version of the flyer (updated in 2015) as support for its generic description of the mature minor rule.Footnote 194 The University of Washington continues to publish the 2006 version.Footnote 195 One of the nonprofit organizations that has long been associated with the document continues to distribute a 2017 version.Footnote 196 Most notably, until at least 2020, the King County (Seattle) government distributed a derivative work titled “The Mature Minor Rule” which provided that the rule was “created” by Seibly but that its “age guideline is not as restrictive as it was when [it] was developed” in that case.Footnote 197 Without providing any additional legal support for this move away from its terms, the County advised that “[t]reating both 13 and 14 year olds as Mature Minors when they demonstrate key qualities of the Mature Minor is reasonable. Treating youth who are 12 and under is up to the provider’s best judgment.”Footnote 198 The document then returned to Seibly, listing the additional criteria the court set out for determinations of emancipation, cementing what appeared to be an approximately sixteen-years-long effort to have that case stand for a proposition that was foreign both to its facts and to the controlling doctrine.Footnote 199
Given this, it is not surprising that our sources referred to the flyer as authority for the further proposition that Dennis had legal decisionmaking authority specifically because he was fourteen. Although neither the flyer nor Seibly translates “mature” as fourteen, the move to that specific age as a proxy for maturity can be traced to the multiple manifestations of this effort, which were only reinforced by the related messages from the AAP and some of the medical literature on assent and consent.Footnote 200
As Isolde Raftery’s reporting makes clear, reliance on this age proxy was critical to the outcome in Dennis’s case.Footnote 201 From the day he was admitted to the day he died, no other determination of maturity was ever attempted by the medical or legal decisionmakers involved in his case.Footnote 202 Not the one derived from Seibly and listed on all versions of the flyer. Not the one states—including the State of Washington—use in the abortion context. And not any from medicine itself.
Consistent with this state of the record, Dennis’s attending oncologist testified at the emergency hearing the day before Dennis died:
[I] met with all of my senior colleagues on Wednesday night[.] … [W]e acknowledge[d] that even though someone [is] not an adult at about the age of 14[,] assuming normal cognition and no coercion[,] … we owe respect to a 14 year old[.] … That applies to research studies and to general care. Even thought [sic] we disagree with the decision [to forego standard treatment], 70 percent … is a good chance and a blood transfusion is an easy thing to do[,] [w]e feel strongly with the rest of the group that a 14 yar [sic] old [who is] able to clearly articulate and explain why … that we owe respect to. Footnote 203
It is noteworthy that in his testimony, Dennis’s oncologist did not argue that Dennis was mature. Rather, the transcript suggests that he was proceeding on the view that at fourteen, a typical patient has the cognitive capacity to satisfy medicine’s informed consent/assent standard, as well as on the basis of his related concerns about the physical issues associated with regularly transfusing a noncompliant patient.Footnote 204 His case notes are consistent, indicating that he focused on ensuring that Dennis was lucid and understood the implications of both treatment and treatment refusal.Footnote 205
Hospital counsel took the position that his role was to be an advocate for the doctors on staff, and his view was that the law could be read to allow him to defend their decision to respect Dennis.Footnote 206 To support this reading, counsel cited the flyer and related assent rules pegged to the age of fourteen, as well as his sense that the local division of CPS would not intervene in the case because their decisions were in line with Seattle’s culture of tolerance for cultural and religious diversity.Footnote 207 Assuming the flyer was accurate, the mature minor rule would negate any eventual medical malpractice claim because Dennis had provided informed consent. And because both Dennis and his aunt agreed that he should refuse treatment, until his parents were notified of his condition just days before his death, there was no sign that anyone would be interested in filing such a claim. Indeed, the risk of tort liability seemed to run in precisely the opposite direction, as the lawyer someone hired for Dennis in the week before his death had written to the hospital to say that treating him would put the hospital at risk of a battery claim.Footnote 208 Finally, non-intervention by CPS would signal that the relevant experts in maltreatment law did not see the failure to treat as actionable medical neglect. That Dennis’s parents were not consulted had no bearing because his aunt had represented herself as his legal guardian.
Counsel’s analysis exemplified practical, on-the-ground lawyering. That the matter was resolved in the hospital’s favor, at least in terms of the formal law, suggests that he did his job. He may have taken a risk that some others would have avoided, but there is no reason to believe it was anything but consistent with his client’s interests. That his “higher ups” had him place a courtesy call to CPS following their team meeting on Wednesday, the 21st, provided the hospital with effective cover.Footnote 209
In any event, it appears from the record that hospital counsel correctly perceived that CPS was not inclined to characterize Dennis’s situation as medical neglect; or that CPS did not understand at the time of the call that Dennis’s situation was as dire as it was; or, because the next day happened to be Thanksgiving, that further work on the matter was simply put off by CPS until the following week.Footnote 210 Regardless, it was not until right after the long holiday weekend—on Monday, November 26, when CPS’s investigator sought to interview Dennis in person—that CPS learned that he was no longer lucid and likely just days from death.Footnote 211 The hospital staff who spoke with the case worker indicated that they were surprised Dennis had made it through the weekend.Footnote 212 Regardless of the reasons for CPS’s nonaction on November 21, once it understood the critical nature of Dennis’s situation, CPS connected with his parents, flew them to Seattle, and filed an emergency petition for a dependency declaration, a pick-up order, and an order compelling a transfusion.Footnote 213
The following morning, on Tuesday, November 27, a local magistrate judge heard from Dennis’s father (who testified that he wanted Dennis to have the transfusion); Dennis’s teacher (who testified that he was anxious to please his aunt); Dennis’s aunt (who testified that he was committed to his faith and should not be transfused); and Dennis’s social worker and doctor (who testified that he was capable of making the decision himself, that we owe respect to a fourteen year old, and that if transfusions were ordered, an order also needed to be entered to permit the hospital to restrain him in the event he resisted treatment).Footnote 214 Lawyers were appointed for Dennis’ parents and the matter was transferred to the county judge assigned to hear cases that day, who said that he would render a decision the next morning.Footnote 215 According to Isolde Raftery’s reporting, that afternoon and evening, the judge—who had not had occasion to try related matters and was not familiar with the applicable law—sought to read and learn as much as he could, and then he went to bed.Footnote 216
The next morning, on Wednesday, November 28, the judge read this decision from the bench:
I think it is time to do what Dennis has decided, to place this in God’s hands. I find nothing to justify my finding that Dennis is either abused nor neglected or that he has not adequately been cared for. This is a very personal decision, which Dennis has made. Dennis has the capacity to make it.Footnote 217
Dennis died at six o’clock that night.Footnote 218 A little over a month later, on January 7, 2008, CPS formally closed its investigation.Footnote 219 A note in the file concludes, “There were not any abuse or neglect issues as the aunt took the child to the doctor and obtained treatment for the child. This is a case where the child chose his fate.”Footnote 220
V. INDICATIONS FOR MEDICINE AND LAW
Parts II and III of this Article provide descriptive accounts of the law on adolescent medical decisionmaking rights as it exists on the books and as it stands on the ground. Part IV provides an analysis of the Lindberg case with a focus on how the disjunction between these two expressions of the law affected the decisions that ultimately contributed to Dennis’ death. Apart from its standalone value, for purposes of this Article this analysis illustrates the risks that arise when institutional boundaries, authority, and standards are unclear or ignored, or when decisionmaking is poorly guided and thus ad hoc. This final section is prescriptive; it suggests reforms for medicine and for law that derive from the analysis of current practices.
Although it is commonplace to say that patients have decisional autonomy, it has long been the case that medical decisionmaking is a dynamic, interactive process that also involves physicians exercising their autonomy and, where necessary and appropriate, ethical and judicial players exercising theirs. Each of these players brings different disciplinary competencies, authority, and normative priors to bear on medical decisionmaking. Their interactions impart lessons about the strengths and weaknesses of their respective approaches but also about the problems that arise out of the intersections themselves. Our normative claims are that these lessons should be the basis for reform of applicable standards and practices in both medicine and law and that with respect to adolescent medical decisionmaking in particular, consistent with both medical and legal standards, those reforms should privilege (1) the standardization of process to avoid ad hoc decisionmaking; (2) the inclusion of the minor’s voice in that process according to an “adults in training” or “guided or supported decisionmaking” model that has them practicing and gaining independence incrementally and graduating to full autonomy by the age of majority; and (3) the preservation of physical life and other generally-agreed upon essential systems.
A. Indications for Medicine
Medicine’s institutional competence and authority extend to the evolution and establishment of medical standards of care as well as to the medical ethics process and standards that attach within that sub-discipline. Importantly, both medicine and medical ethics exist, evolve, and operate beside but separate from related law.Footnote 221 In the development of medical standards of care and of the medical ethics process and standards, medicine is guided by physical facts such as the state of the physical body and the physical implications of particular treatment, but it is also guided by norms including a fealty to science, healing, and patient autonomy. The societal boundaries of medicine’s institutional competence and authority are set by law which itself has the institutional authority to check “out of bounds” moves and decisions. At least hospital counsel, if not also the risk department and the managers of physician practice groups, may act as intermediaries between medicine and law in this regard.
Medicine’s approach to adolescent medical decisionmaking is varied. In some contexts, physicians and their institutions hold firm to the view – which is wholly consistent with formal law—that the adolescent patient’s voice is important but ultimately channeled and checked by their adult proxy, generally their parent. In others, physicians seek to establish and treat that voice as distinct from that of their proxy, and also as more broadly preemptive. The latter approach is informed by the fiduciary nature of the doctor-patient relationship and by the knowledge that, although the adolescent brain is still evolving toward complete capacity, it generally reaches the specific capacity to meet the informed consent standard by early-to-mid adolescence.Footnote 222
The decision to treat the minor’s voice as distinct from that of their proxy and as preemptive in circumstances where they have the specific capacity to meet the informed consent standard represents an institutional strength but also a weakness.
It is a strength because it focuses on respect for the individual based on their factual (rather than political) capacities in a context in which that focus is perhaps uniquely warranted, i.e., in matters related to the individual’s bodily wellbeing. Especially as the child becomes an adolescent and forms a sense of themselves as physically and psychologically distinct from their parents, respecting their physical integrity sometimes requires respecting their contributions to medical decisionmaking, if not their decisions themselves. Whether the medical issue is big and important or small and relatively insignificant, it is constructive that medicine sees, responds to, and respects the child as an individual in their own right. In contrast, ignoring the child as to matters pertaining to their own body can be deeply destructive of their wellbeing and developing personhood. Medicine is arguably better than law on this point because it is flexible in circumstances where law, which is focused on parental rights, sometimes results in a trap from which children cannot escape even after they have reached the age of majority.
Establishing and treating the adolescent’s voice as distinct and preemptive is a weakness in that adolescent decisionmaking capacities remain incomplete, i.e., their higher cortical functions beyond the capacity for informed consent are merely developing, not developed; we know from common experience and empirical evidence that even cognitively capable teenagers sometimes make very bad decisions. Most of us would not wish to be forever bound to choices we made in that formative period in our lives, and if we were later told that this had happened out of respect for our emerging autonomy, we might wonder about the judgment of the adults in the room. This approach is also a weakness because it collides with strong social norms about parents as children’s first and best caretakers in the transition to adulthood and about the responsibility of adults to protect and preserve children’s lives and options during the period of their minority. Finally, because adolescent medical decisionmaking rights are generally dependent on the inclinations of particular physicians acting in particular circumstances, they are neither systematically and transparently regulated to ensure that they are in fact protective (and not damaging), nor consistently available to ensure that similarly situated individuals – including children and their parents – are treated equally. The effect is that adolescents and their parents who lack financial and cultural capital are disparately impacted.
To address these weaknesses, medicine needs to develop a better understanding of the inflexible rules from law not only so that the players know what is in and out of bounds for liability purposes, but also – and for us mainly – because those rules express valuable norms about the care and lives of minors, and about non-discrimination. (As things stand, because those rules are often bent and broken, including by institutional actors who should know better, it appears that they are flexible when they are not.) Medicine needs to incorporate these inflexible rules within its structures and understand that they are valuable beyond their liability implications. We should train medical professionals and their support staff consistently, for example, by ensuring that from medical and professional school onward, they understand that assent is different from consent; that with some jurisdictional exceptions that are not broadly applicable, minors do not have general medical decisionmaking rights, and even where they do, their authority generally extends only to physically beneficial treatment not to treatment refusals; and that failing to provide a minor with available, lifesaving medical attention is generally considered medical neglect. Finally, incorporating the inflexible rules from law also requires the adoption of systems to curtail the discretion of individual physicians and provider groups to act sub-rosa on an ad hoc basis. Arbitrary, even if well-intentioned, exercises of power should be restricted because they tend to jeopardize individual and societal welfare.Footnote 223
At the same time, to the extent the law’s rules are not inflexible – where there is room either to push back on the law or to work creatively but still legitimately within its boundaries – medicine should seek to influence that development. It is already doing this indirectly when it includes the adolescent’s voice in medical decisionmaking informally, and negotiates with dissenting parents consistent with its own norms. There is nothing in law that prevents a physician or practice group in non-emergency settings from resolving the terms of engagement with their patients’ proxies in a way that incorporates fiduciary principles and an evolving respect for the child’s autonomy so long as that proxy remains the ultimate decisionmaker once the doctor-patient relationship is established. However, the development of formal law codifying this informal practice would express important commitments beyond medicine and secure benefits for adolescents more systematically. Parental rights in this country are deeply embedded in the law, which is reflected in, among other things, our rejection of the United Nations Convention on the Rights of the Child. Nevertheless, laws that are pegged to its evolving capacities standard already exist. Potentially useful examples include adolescent reproductive autonomy law, the assent rules that apply to pediatric research, and graduated licensure for adolescent drivers. Medicine should teach law how it might formally include the adolescent’s voice in general medical decisionmaking consistent with the approaches taken in these related areas.
B. Proposals for Law
Law’s institutional competence and authority extends to the codification and expression of broadly held social norms and the development of specific standards for itself and others, including standards that circumscribe the boundaries of other institutional authority. In the development of the specific standards that govern medical decisionmaking, the law is guided by a combination of norms, including those about the importance of process and the rule of law, individual autonomy, the preservation of life, reasonable care, and nondiscrimination. These norms are similar to but, as we have shown throughout this Article, also distinct from those that govern medicine’s approach to decisionmaking.
As we describe in Part II, the law’s approach to adolescent medical decisionmaking is relatively simple: except in specifically delineated circumstances – denominated exceptions to the general rule – legal autonomy is not attained until the age of majority. Until then, general medical decisionmaking rights formally belong to the minor’s parents or guardians. As a doctrinal matter, that authority is based in a combination of fiduciary and property-like principles, although the former are likely to be preferred in the modern context. Consistent with these principles and the law’s fealty to life, parent proxies have almost plenary authority, i.e., their decisionmaking rights are checked only in circumstances where their exercise would result in serious harm to their charge. Within this rubric, withholding necessary medical treatment is legally denominated medical neglect. An important – if not the most important – objective is to get the child physically to adulthood when they can decide for themselves.
Locating general medical decisionmaking authority in the child’s adult proxies to the age of majority is both a strength and a weakness of the law.
It is a strength in that even older, cognitively capable adolescents lack the experience and maturity necessary to make consistently good decisions, and so it is in their interests – and in society’s interests – that they are represented by designated adult proxies who have rights and responsibilities that are themselves consistent with fiduciary principles. Although it is often considered beneficial in different circumstances to afford children the leeway to make and to learn from bad decisions, and to experience failure in the process, this is unlikely to be true in most medical settings where bad or failed decisions can have existential implications. (As with our now typical approach to graduated licensure in the context of driving, in the medical setting, it is understood that unguided discretion and absolute autonomy are likely to have societally unacceptable effects.) The law’s selection of the child’s parent as their default first-best caretaker is generally held to be the likeliest to yield individually-sound, protective decisions. Finally, the fact that all children have a designated default caretaker assures – at least theoretically – that no child is subject to arbitrary treatment in this setting.
The law’s approach is problematic principally because its bright line rules do not recognize the fact that capacity for good decisionmaking develops incrementally along with individuality and personhood over the course of the child’s minority, and there are significant costs associated with policies that ignore their voice. It is also problematic because, in intact families, the law’s fiduciary standard tends not to place much value on children’s psychological (as opposed to their physical) wellbeing. Finally, children are subject to arbitrary treatment notwithstanding best caretaker theory because either they do not have an active parent, or their parent lacks the financial and cultural capital required effectively to exercise their rights and responsibilities.
The implicit critique from medicine centers on the first and second of these three weaknesses. Because medicine is driven by science, including by an understanding of the inextricable physical relationship (rather than theoretical dichotomy) between the mind and the body, its sense of its fiduciary obligations to pediatric patients encompasses both, or at least it sees them as an integrated system. In turn, this means that medicine tends to see and place value on the child’s real or actual capacities and even on their early efforts to exercise decisional autonomy. Medicine’s approach to these issues is increasingly consistent with the broader society’s evolving concept of the child as an individual in their own right, and of related, also evolving social norms about our responsibilities to children.
Law should partner with medicine on the development of formal rules (not only practice standards) that reflect these norms. Shared decisionmaking models that contemplate the inclusion of the minor’s voice in an advisory or educational capacity in the process leading up to the decision should be within constitutional bounds because parents would retain final decisionmaking rights. The extra procedure involved in their exercise would be consistent with the fact that parental rights exist in part to ensure that a committed adult is tending not only to the child’s physical welfare but also to their successful march toward adulthood and full citizenship. The latter undoubtedly includes the development of their adult decisionmaking capacities. In their participatory aspects, shared decisionmaking models support parents by fulfilling that educational function. Parents would retain the right to reject such models, but if they were part of the deal that established the doctor-patient relationship at the outset, so long as the situation was not emergent, they would be enforceable. Like the rules that are part of a parent’s contract with a private school – for example, for a particular curriculum or disciplinary process – they would be lawful delegations of parental rights.
Regardless, the law needs to do more to translate and disseminate its inflexible rules. It is deeply problematic that so much informal law contradicts rather than fills interstices in the law is deeply problematic. This is especially so as it concerns law that protects children’s lives and against ad hoc, discriminatory treatment of those who lack the financial and cultural capital necessary to secure their rights and interests. We hope that this Article will do some of that work, but the development of learning modules designed specifically for medicine – including for medical schools, hospital counsel, and continuing medical education – would be worthwhile. Those who work with the law could also use some version of the same. This includes judges, lawyers, child protective services, and hospital social workers. Certainly, no child should suffer serious harm because there is a dearth of clear and correct knowledge about the law’s requirements for their protection.
The question whether adolescents have and should have general medical decisionmaking rights is understudied, important, and perennially topical. Whether adolescent girls have and should have the right to make their own abortion decision is most frequently discussed in this context, but there are other recurring situations that raise these same questions. One is whether religiously motivated treatment refusals by adolescents should be honored. And, increasingly, another is whether trans teens can and should be able to direct their own medical treatment, including as it concerns the use of puberty blockers, gender affirming hormones, and surgery; the latter is especially difficult in this period, because many trans teens are struggling with dissenting parents, and while the medical standard of care is established, it is still relatively new and so questions about its long term implications remain to be answered. A variety of more mundane but still important situations involving treatment choices that could be made by adolescents comprise the bulk of the cases that arise on the ground.
Resting decisionmaking authority in adolescents in general medical settings is a complicated business. On the one hand, we know that by mid-adolescence at least, but certainly before the age of majority, teenagers have the cognitive capacity for rational decisionmaking, including for satisfying medicine’s traditional informed consent standard. The latter requires that medical decisions be made voluntarily, with at least a basic understanding of the physical risks and benefits of the treatment choice. On the other hand, we know that even bright, disciplined teenagers often make very poor decisions because they lack the life experience necessary for making better ones, and their full neurological capacity – especially their executive functions—are still in development. The dilemma is ultimately whether and how to respect their existing capacities as well as their individuation—their emerging autonomy and personhood—while also remaining appropriately protective given the stakes.
Formal law remains clear: the carefully delineated exceptions to the traditional rule that parents make their children’s medical decisions through the period of their minority do not include general medical decisionmaking. Most states have not adopted the mature minor rule in any form, and other exceptions – like the right to get treatment for sexually transmitted infections—are designed exclusively to address very particular public health concerns. Because this legal state of affairs is the result of a strong, fiduciary-driven constitutional doctrine of parental rights and a set of state laws that reinforces its terms, adolescent decisionmaking rights exist mostly informally.
That informal law appears to be robust. Although this is not the case everywhere, as we describe in this Article deviations do not appear to be anomalies; indeed, in some places they are apparently routine. In part, this is because the relevant players do not know or choose to ignore (to nullify) formal law. But it is also because, for many adults, it is both intuitive and a moral imperative to treat even the minor patient as an individual in their own right, perhaps especially as it concerns their body, in circumstances where the child seems to be able to express an intelligent, deep-seeded sense of their separate (from her parents) needs and values. The law’s concept of the child as one with their parents and as categorically incapable to the arbitrary age of majority, even if this is ultimately a fiduciary design, sits uncomfortably with how the law should be, at least in individual cases.
In this Article, we argue that informal law is problematic, but formal law should take lessons from the resistance to its terms and use them to guide the development of better doctrine. Because informal law operates sub rosa and in an ad hoc fashion, it risks unacceptable harm to individuals and discrimination against those who lack the financial or cultural capital to protect their rights and interests. These risks must be addressed including through educational initiatives that ensure that the law is known and understood. At the same time, the imperatives that drive deviations, especially medicine’s respect for the child and their emerging autonomy and personhood, should inform the law’s fiduciary model. To the extent that parental rights are inflexible because they are constitutionally fixed, they will continue to provide the frame within which such legal innovation takes place. But because these rights are rationalized on the basis of society’s interests in the survival and healthy development of children, and because parents partner with their communities in that childrearing venture, there is room for medical and medical ethics norms to influence the sub-constitutional law that rests within that framework.