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Second Place, 2018 Howard C. Schwab Memorial Essay

Lessons from My Sister’s Keeper: A Minor’s Right to Refuse Lifesaving Treatment

Stephanie S. O’Loughlin

“Do you think it would work?” I asked. “A kidney transplant?”

Kate looked at me. “It might.”

She leaned over, her hand on the light switch. “Don’t do it,” she repeated, and it wasn’t until I heard her a second time that I understood what she was really saying.

—Jodi Picoult, My Sister’s Keeper1


Jodi Picoult’s My Sister’s Keeper is a novel that explores the difficult topic of the terminal illness of a sixteen-year-old girl and the lengths her family goes through in order to preserve her life. Much of the literature written on this novel focuses on Anna, the sister who was born in order to become a donor for her sister, Kate, and the ethics of forcing such donations from a child.2 Anna hires a lawyer to sue her parents for the “rights to [her] own body” so that she cannot be forced to donate a kidney to her sister.3 While Anna is providing testimony in court, however, it is revealed that Kate had appealed to Anna and asked her to let her die.4 This revelation not only transforms Anna’s seemingly selfish act but also raises two important questions: What lengths must a minor go through in order to die with dignity, and when is it possible for a minor to refuse lifesaving treatment?

Generally speaking, minors are presumed to be incompetent to consent to their own medical treatment, but some states accept the mature minor doctrine, which allows minors to independently consent to certain medical procedures if certain criteria are met.5 But even in the states where this doctrine is accepted, there is no universal standard that dictates when a minor is mature enough to consent to medical procedures without the involvement of her parents.6 Although My Sister’s Keeper is a work of fiction, it presents a compelling narrative of a minor who is desperate to have agency over her body and the medical treatment that her body undergoes. Minors who are terminally ill may feel trapped in their bodies and feel forced to prolong what is ultimately their physical suffering. Based on the constitutional right to bodily integrity, a minor should have the right to invoke the mature minor doctrine in order to refuse lifesaving medical treatment.

I. The Development of the Mature Minor Doctrine

A. The Emergence of the Doctrine

Reproductive rights have been imperative to the formation of the mature minor doctrine. One of the earliest authoritative decisions using the mature minor analysis was Smith v. Seibly.7 In this case, the plaintiff had elected to undergo a vasectomy at eighteen years old, which at the time in Washington State law was in the age of minority.8 When the plaintiff reached the age of majority, he filed suit against the physician who had performed the procedure, claiming that he had been unable to consent to the surgery because of his age.9 The Washington Supreme Court held that the plaintiff was an emancipated minor at the time that he had given his consent to the surgery because, at eighteen years old, he was already married, the head of his household, and economically independent, and he had completed high school.10 The court had previously determined in Grannum v. Berard11 that a minor’s ability to consent to surgical procedures required case-by-case analysis,12 and it stated that “age, intelligence, maturity, training, experience, economic independence or lack thereof, general conduct as an adult[,] and freedom from the control of parents”13 were all factors that, when weighed together, would determine whether a minor was mature for the purpose of making medical decisions.

Similar factors appear in other early cases that helped shape the mature minor doctrine. In Cardwell v. Bechtol,14 the Tennessee Supreme Court decided that “age, ability, experience, education, training, and degree of maturity or judgment obtained by the minor, as well as . . . the conduct and demeanor of the minor at the time of the incident involved” would determine whether a minor had the capacity to consent to medical treatment.15 Other states have adopted the doctrine by judicial decision or statute,16 although with slight variations.17 In some states, the criteria of the doctrine are more accommodating than others. In Alabama, for example, any person aged fourteen and over has the authority to consent to medical procedures.18 In Delaware, any minor may lawfully consent to certain medical treatments if reasonable efforts were made to first obtain consent from the parents.19 For some states that provide the mature minor doctrine by judicial decision, the minor must meet certain criteria to prove that he or she can provide informed consent to the procedure, and sometimes it must be determined that the medical procedure would be the in the minor’s best interests.20

1. The Best Interests of the Child

Best interests of the child is a varying, paternalistic standard that complicates a minor’s access to certain medical treatment, including the refusal of medically accepted, lifesaving treatment. In certain states, an evaluation of a minor’s best interests is built into statutes that give minors access to abortions. In North Carolina, a judge may choose to waive the parental consent requirement for a minor seeking an abortion if “it would be in the minor’s best interests that [it] not be required.”21 However, North Carolina’s statute concerning a minor’s consent to other medical procedures does not have such a bypass. Minors are only allowed to seek whatever treatment they need if they are emancipated22 or if they are seeking treatment for venereal disease, pregnancy, substance abuse, or “emotional disturbance.”23 An exception can be made for emergency medical treatment,24 but the statute is limited to the aforementioned circumstances. In in some jurisdictions, determining the “best interests of the minor” involves an evaluation of the parent-child relationship. In Florida, the court uses the following factors to determine whether notifying a parent that his or her minor child is seeking an abortion is in her best interests:

the minor’s emotional or physical needs; the possibility of intimidation, other emotional injury, or physical danger to the minor; the stability of the minor’s home and the possibility that notification would cause serious and lasting harm to the family structure; the relationship between the parents and the minor and the effect of notification on that relationship; and the possibility that notification may lead the parents to withdraw emotional and financial support from the minor.25

Many of the concerns evident in the Florida court’s analysis are applicable to a minor’s desire to refuse lifesaving medical intervention. Like abortion, passive euthanasia evokes strong moral objections that could put a strain on the parent-child relationship.

In jurisdictions where the mature minor doctrine can be invoked in all medical decision-making, an analysis of the minor’s best interests includes a greater variety of criteria. Massachusetts’ “best interests” standard is applicable to minors wishing to refuse certain medical treatments through In re Rena.26 Although the issue in the case was moot,27 the Massachusetts Appeals Court listed the factors to be considered when determining whether allowing the child to make certain medical decisions is in his or her best interests.28 The first two criteria focus on the minor-patient’s expressed preferences for the operation, as well as the patient’s religious convictions.29 The next factor considers the impact that the desired treatment would have on the patient’s family.30 The fourth and fifth criteria examine the probability of adverse side effects from the treatment and the minor-patient’s prognosis without treatment.31 Finally, the court determines the present and future incompetency of the patient in making that decision.32 The factors that focus on the minor-patient (i.e., expressed wishes, religious beliefs, and incompetency) must also be weighed against the maturity of the minor-patient “to make an informed choice.”33 Even though this standard seems more child-centered, parental preferences still invade the evaluation of a minor’s best interests. While Massachusetts may be progressive in that it makes the mature minor doctrine applicable to procedures outside of those relating to reproductive rights, the type of treatment a minor seeks could inform a court’s decision, implying that even if a minor meets all other criteria and is deemed mature in all other respects, the type of treatment chosen (or refused) can influence the court’s decision.

2. Informed Consent Standards

In Massachusetts, a determination of a minor’s maturity is also influenced by the minor’s ability to demonstrate that he or she is capable of giving informed consent to the procedure.34 This legal standard also exists in Arkansas, Idaho, Illinois, Kansas, Maine, Nevada, Tennessee, and West Virginia.35 Generally speaking, consent is considered informed if the patient demonstrates the capacity to make decisions; if he or she is provided with adequate information so that a reasonable person in the same position would be able to make an informed decision; if an appropriate amount of information is disclosed to the patient; and if the patient’s decision was made without the influence of fraud, coercion, or duress.36 Minor-patients, however, do not have the same rights to informed consent when they are under the care and custody of their parents.37 This is justified not only as existing under the umbrella of parental rights, but also because the law presumes that parents always act in their child’s best interests, that children are incapable of making their own medical decisions, and that parents have the capacity and maturity to make difficult decisions, and also because parents tend to bear the burden of medical treatment costs.38 A minor-patient must rebut these presumptions in order to demonstrate that he or she is capable of rendering informed consent.

Under Tennessee law, in order for a minor-patient to give valid consent to a medical procedure, he or she must demonstrate the “capacity to consent to and appreciate the nature, the risks, and the consequences of the medical treatment involved.”39 In the leading case addressing this issue, parents on behalf of their minor child sued an osteopath who had treated for subluxation of the spine and bilateral sacroiliac slip.40 The minor-plaintiff sought treatment with the defendant by herself after informing her parents of her intent to see him so that he could treat her back pain.41 The court determined that, under the rule of sevens,42 the minor-plaintiff was presumed to have the capacity to consent to the defendant’s treatment.43 Additionally, the court stated that a minor’s capacity to consent is also contingent upon the minor’s abilities, experiences, education, training, and degree of maturity, as well as upon the minor’s ability to understand the risks and consequences of treatment.44 The court also elected to consider the “totality of the circumstances,” as well as the actual nature, risks, and probable consequences of the treatment sought.45

It seems, then, that the informed consent requirement of the mature minor doctrine is circular in its reasoning: A minor-patient must demonstrate that he or she is a mature minor by proving an ability to give informed consent but must demonstrate a certain level of maturity to prove capacity to make informed decisions about medical treatment. If the nature of the treatment is also considered in these circumstances, then a fact-finder could potentially decide a minor lacks maturity based on the course of treatment he or she wishes to elect. This substantially limits the choices a minor may actually have when undergoing medical treatment. A refusal to undergo medical treatment may be considered an “immature” decision simply because it is a refusal. Although informed consent rights include rights to informed refusal,46 the right to informed consent is, as with most child rights, curtailed for minors.

B. In re Cassandra C. and a Minor’s Right to Refuse Lifesaving Treatment

A minor’s right to refuse lifesaving treatment is limited, even when that minor can otherwise demonstrate his or her maturity. Few cases have recognized a minor’s right to refusal, and the circumstances under which this refusal right is granted are limited. Perhaps the strongest and only successful way that a minor has refused lifesaving treatment is through the right of religious freedom. One of the most-cited cases on this issue, and on the mature minor doctrine in general, is In re E.G.47 At seventeen years old, E.G. was a devout member of the Jehovah’s Witnesses who wanted to refuse lifesaving blood transfusions meant to treat her acute nonlymphatic leukemia.48 The State of Illinois filed neglect petitions on behalf of E.G. against her mother, relying on the dire circumstances that lack of medical treatment would create.49 The appellate court reversed the trial’s court’s order to appoint E.G. a guardian who would consent to the blood transfusions and determined that E.G. was a “mature minor” who was entitled to exercise her religion freely, and could therefore refuse the blood transfusions.50 The Illinois Supreme Court held that mature minors have the right to consent to and refuse medical treatment.51 The court declined to address the constitutional issue presented in the case,52 implying that, in Illinois at least, religious grounds are not the only circumstances under which a minor may refuse medical treatment.

Massachusetts and Oregon were introduced to the issue of a minor refusing lifesaving treatment in the context of religious freedom in In re Rena53 and In re Connor.54 Massachusetts’ best interests standard takes into consideration a minor’s expressed religious preferences as part of its balancing test,55 and, in In re Rena, the Massachusetts Appeals Court found that the lower court had erred in ordering the petitioner to receive the blood transfusions without weighing her religious objections as a component of the mature minor doctrine.56 However, the respondent-minor had turned eighteen by the time this issue reached the appellate court, and it vacated the final order because the issue had become moot,57 thereby declining to hold definitively whether the respondent-minor was a “mature minor” or whether her constitutional rights had been violated. Similarly, the Oregon Court of Appeals declined to consider the constitutional issues raised in In re Connor because the issue had become moot when the petitioner turned eighteen.58

The Maine Supreme Court discussed its approach to the mature minor doctrine in In re Swan,59 a case involving a nonreligious refusal of lifesaving (or, more accurately, life-preserving) treatment. The court was asked to consider statements that a patient in a persistent vegetative state had made prior to a life-threatening accident, which occurred when he was seventeen-and-a-half years old.60 Coincidentally, the patient had a tangential connection to the case controlling this decision, In re Gardner,61 and in light of the publicity surrounding it, had made a statement to his mother that, were he to become comatose, he would want his mother to “let [him] go to sleep.”62 While accompanying his brother on a hospital visit for a comatose friend, the patient again made similar remarks, stating, “I don’t ever want to get like that . . . I would want somebody to let me leave—to go in peace.”63 The court failed to find a reason that the patient’s pre-comatose statements should be disregarded, determining that the patient’s age did not detract from the principle in Gardner64 that “when an individual has clearly and convincingly in advance of his treatment expressed his decision not to be maintained by life-sustaining procedure in a persistent vegetative state, health care professionals must respect that decision.”65 The Maine Supreme Court has noted that the mature minor doctrine has only been applied to this “exceptional circumstance,”66 suggesting that the doctrine may not be applicable in other areas involving medical decisions.

This muddied body of case law is what the Connecticut Supreme Court had to draw from when it decided In re Cassandra C.67 The petitioner, Cassandra, was sixteen years old when she was diagnosed with Hodgkin’s lymphoma.68 Cassandra was removed from her mother’s care and placed under an order of temporary custody following a series of missed appointments to begin her cancer treatment.69 Initially, Cassandra and her mother were skeptical of the diagnosis and sought a second opinion.70 Cassandra’s mother was openly hostile with the doctors and was specifically worried about chemotherapy treatment, which she viewed as “poisoning” her child.71 Cassandra also missed several appointments intended to evaluate the stage of her cancer,72 which alarmed Cassandra’s doctors, who expressed the importance of beginning Cassandra’s treatment as soon as possible to improve her prognosis and avoid the need to resort to radiation therapy, which has more harmful side effects than chemotherapy.73 Because of the mother’s combativeness and observed unwillingness to have her treated, Cassandra’s doctors contacted the Connecticut Department of Children and Families (DCF).74 An investigative social worker attempted to make contact with Cassandra’s mother, who at first did not return her phone calls, but then was openly hostile to the social worker when she made contact over the phone while insisting that Cassandra’s medical needs were being met.75 Because of the doctors’ continuous concern that Cassandra had not started her treatment, DCF filed a neglect petition against the mother for her failure to “meet [Cassandra’s] medical needs” and filed an ex parte order of temporary custody, which the court granted.76

Under the authority of the court, DCF removed Cassandra from her home and took her immediately to the emergency room, where Cassandra expressed her fears about “waking up with ‘tubes sticking out of her’” and about angering her mother.77 At the preliminary hearing on the order of temporary custody, the court appointed Cassandra a guardian ad litem to assist in evaluating Cassandra’s best interests and scheduled an evidentiary hearing.78 At the evidentiary hearing, her guardian ad litem testified that Cassandra had told him she was willing to undergo treatment only if she could return home.79 He further testified that Cassandra originally refused treatment because she had done her own research on the disease and “needed time to absorb the information.”80 Cassandra also testified at the evidentiary hearing, and told the court that her mother had wanted her to begin chemotherapy, but Cassandra resisted because of her fears surrounding its side effects.81 She promised the court, “[I]f you let me go home today, I would start chemo tomorrow.”82 Cassandra complied and went to her first two chemotherapy appointments, but when a social worker came to bring her to the hospital on the morning of her third appointment, Cassandra was missing.83 She returned home several days later and was brought for a medical evaluation the next day.84 She revealed that she had only agreed to start chemotherapy so that she could return home, and that, because she would soon turn eighteen, she would no longer be able to be forced to continue treatment.85

Cassandra’s behavior throughout the court proceedings persuaded the Connecticut Supreme Court that she was not a “mature minor” who was competent to make her own medical decisions.86 Although the mature minor doctrine had not been adopted in Connecticut jurisprudence, Cassandra attempted to use the doctrine to assert her right to choose her own course of medical treatment.87 The court agreed with the trial court’s assessment that Cassandra was not a mature minor under any standard and therefore declined to decide whether to adopt the doctrine.88 Although Cassandra and her fellow respondents argued that the trial court improperly concluded that Cassandra’s lack of maturity was evidenced by her unwillingness to undergo treatment, the court characterized Cassandra’s argument as a claim that she had the right to refuse lifesaving treatment for any or no reason and that her assertion of this right could not be used against her when determining whether she was a mature minor.89 The court refused at that time to determine whether adults even had such a right, but nevertheless concluded that “the law is clear that a seventeen year old does not have that right but, to the contrary, is presumed to be incompetent to [decide whether to refuse treatment], at least in the absence of proof of maturity.”90

The Connecticut Supreme Court’s reasoning underlines the problem inherent in a child’s medical treatment: No matter how close to the age of majority, minors have no articulated rights to make decisions concerning their bodies. Even in those jurisdictions that employ the mature minor doctrine, minors have the burden of proving their maturity using standards that are sometimes paradoxical and often circular in logic. Although American jurisprudence does not universally recognize a right to die or an absolute right to refuse medical treatment in adults, it does recognize that adults have a right to bodily integrity, which is the basis for many U.S. statutes, as well as common law.

II. Finding a Child’s Right to Refuse Treatment

Arguably, a minor’s right to refuse lifesaving treatment is grounded in his or her right to bodily integrity. Treatments considered lifesaving are almost always invasive, may have harmful side-effects, and are not always guaranteed to actually be lifesaving. Minors should have the right to refuse treatment to avoid subjecting themselves to unwanted bodily invasion. In certain contexts, this right is one that has already been recognized, but overall, is in need of expansion.

A. The Right to Bodily Integrity

The U.S. Supreme Court acknowledged a substantive due process right to bodily integrity in Rochin v. California,91 but the right is one that has long been recognized by common law.92 Bodily integrity as a fundamental right safeguards a person’s body from governmental intrusion93 and is considered a right that is “sacred.”94 Recognition of this right has served as the basis for some of the most controversial of Supreme Court decisions, including the reproductive rights cases. Planned Parenthood of Southeastern Pennsylvania v. Casey,95 which interpreted its groundbreaking predecessor Roe v. Wade96 as “a rule . . . of personal autonomy and bodily integrity,”97 characterized the newly recognized right to abortion as an extension of the powerful right of physical liberty. Bodily integrity is a formidable opponent against governmental interests, even those that are strong and well-established.

The right of a patient to refuse lifesaving medical treatment, which is often characterized as a patient’s “right to die,”98 has also been recognized as tangential to the right of bodily integrity. In Cruzan v. Director, Missouri Department of Health,99 the Supreme Court recognized that the informed consent requirement in medical treatment was derived from the right to bodily integrity.100 Quoting Justice Cardozo in a decision he authored during his tenure on New York State’s highest court, the Court affirmed that a competent adult has “a right to determine what shall be done with his own body,” and an invasion of one’s body without consent constitutes assault.101 Although the issue decided in Cruzan ultimately concerned the constitutionality of the clear and convincing evidence standard that Missouri required to prove that the patient would not have wanted to remain on life support, the Court declared that “[i]t cannot be disputed that the Due Process Clause protects an interest in life as well as an interest in refusing lifesaving treatment.”102 In his dissenting opinion, Justice Brennan stated that a State has no legitimate general interest in preserving life that could outweigh a person’s decision to refuse lifesaving medical treatment,103 and that, in order for the State to have a legitimate interest, it must be established that the patient wishes to be treated.104

Minors’ rights to bodily integrity have been recognized in certain contexts but are generally less robust than adults’ rights. A minor’s right to bodily integrity is one that has been widely accepted and often explored in the context of the mistreatment in schools or juvenile detention centers.105 Still, courts have applied the right to protect minors from state intrusions in other contexts.106 In In re E.G., for example, the Illinois Supreme Court suggested that a minor may invoke the right in the context of refusing lifesaving treatment, as it saw “no reason why [the] right of dominion over one’s own person should not extend to mature minors.”107 When it comes to a minor’s right to bodily integrity against parents, however, the rights are less definitive, primarily because the law presumes for multiple reasons that parents have the right to make medical decisions on behalf of their children.108

In the reproductive rights context, minors’ rights have been protected against parental interference. Some scholars consider Planned Parenthood of Central Missouri v. Danforth109 an early recognition of a minor’s constitutional right to bodily integrity in the context of these rights.110 Overall, minors do not have substantial protections from parental decision-making in the medical context in American jurisprudence. In foreign jurisdictions, however, minors have recognized rights against parental decision-making that are based in their bodily integrity rights. In October 2013, the Parliamentary Assembly of the Council of Europe adopted Resolution 1952, which concerned children’s rights to physical integrity.111 The focus of this resolution was on the protection of a child from unnecessary and nonmedically justified procedures, including male and female circumcision, genital surgery on intersex children, and piercing, tattooing, and plastic surgery.112 The Parliamentary Assembly based its resolution on the United Nations Convention on the Rights of the Child, which protects children against all forms of violence.113 The Convention on the Rights of the Child also recognizes a minor’s right to privacy,114 which is sometimes considered a companion to the right to bodily integrity.115

B. Foreign Jurisdictions: Belgium and the Netherlands

Belgium made headlines in 2014 when it became the first country in the world to legalize the euthanasia of any terminally ill minor, regardless of age.116 This decision, of course, has been met with its fair share of controversy. It is not the first time that Belgium had considered legalizing the voluntary euthanasia of minors; in fact, when the Euthanasia Act of 2002 was first proposed, minors were included in the bill but were later removed to ease opposition.117 The original act defines euthanasia as “intentionally terminating life by someone other than the person concerned, at the latter’s request.”118 While voluntariness is a crucial element in both acts,119 the new legislation extending this right to minors differs significantly from the 2002 Act. Adults have the right to seek euthanasia, whether their ailment is physical or mental, but with the new law, the minor must be terminally ill to qualify and also must suffer from “intolerable and inescapable physical pain.”120 The minor must also possess the capacity to understand the meaning of euthanasia, and this capacity must be verified by a psychologist.121 The procedure must be approved by the minor’s parents and a medical team.122

In the Netherlands, certain minors have had the right to choose euthanasia since the law was originally passed in 2001.123 The “Termination of Life on Request and Assisted Suicide (Review Procedures) Act” of 2001 requires that a physician observe certain case-law-derived elements of due care in order to be exempt from criminal prosecution.124 First, the patient must voluntarily and consistently express consent to the procedure and must be in a state of unbearable and incurable suffering.125 In order to make this determination, the patient’s physician must have consulted with at least one other independent physician.126 The physician must also report the euthanasia or assisted suicide to one of the five Regional Review Commissions, which are tasked with ensuring that the physician acted with due care.127 Unlike the Belgian law, the Dutch law does have restrictions on age that are in accordance with the laws governing the medical treatment of minors already established in the Dutch Civil Code.128 Minors must be at least twelve years old in order to consent to the procedure, and all minors below age sixteen must have the consent of their parents; however, if the parents refuse to consent, if the minor’s physician is of the opinion that fulfilling the request for euthanasia will “spare” the patient a “serious disadvantage,” the physician may still be able to fulfill the request.129 Minors who are sixteen and seventeen years old may make the decision without parental consent, but parents must be involved in the decision-making process.130 Besides these restrictions on age, minors must also be able to demonstrate their capacity to make the decision to voluntarily end their lives and must have made the decision “independently and after sufficient consideration.”131

C. Going Forward: Best Interests and Informed Consent Revisited

Although it is highly unlikely that the United States would welcome a euthanasia law in the near future, if at all, the standards of these European laws can be used to inform an approach to a minor’s refusal to undergo lifesaving treatment. By limiting the euthanasia laws to minors whose ailments are incurable, who are terminally ill, and who are in a state of unbearable physical suffering, Dutch and Belgian legislatures implicate a standard of the minor’s best interests. In American jurisprudence generally, the best interests of the child are often intertwined with familial and paternal interests, which is exemplified by Massachusetts’s mature minor doctrine.132 Instead, the standard for best interest of the child should focus primarily and perhaps solely on the child, especially when the child is experiencing profound physical suffering. One complicated but perhaps necessary component of best interest considerations that should apply is the child’s prognosis with or without treatment.133 If the procedure is technically considered lifesaving but has a low chance of actually saving the minor’s life, then this should work in favor of a minor’s wish to forgo treatment and protectible interest in fulfilling that wish. However, if the procedure that the minor is refusing to undergo would produce a very good prognosis, the State’s interests in the preservation of life may overrule the child’s desires. This approach seems inevitable, as evidenced by the requirements even in liberal jurisdictions that allow for the euthanasia of minors only when the minor’s illness is terminal, incurable, and causes suffering that cannot be alleviated. Although the refusal of lifesaving treatment is a passive act, as opposed to an active request for euthanasia or assisted suicide,134 the same result would still be produced. This would mean that in order for a minor’s right to refuse lifesaving treatment to be introduced into American jurisprudence, the standards that a minor has to meet must be high.

A minor’s beliefs and convictions should be at the forefront of the best interests of the child standard, regardless of whether these beliefs are religious or not. Because religious beliefs implicate a fundamental right that is enumerated in the First Amendment to the Constitution, it is understandable that these beliefs are capable of supporting a minor’s decision to refuse lifesaving treatment. Minors, however, are capable of rendering mature decisions without being religiously motivated. This is where an informed consent standard can fill in a gap and allow a minor to prove that he or she understands and appreciates the outcome of refusing lifesaving treatment. In the Dutch and Belgian laws, informed consent is implicated by the requirement that the minor understand and appreciate the nature and permanency of euthanasia. This is in line with American notions of informed consent and easily transferable to a minor’s right to refuse treatment. But in order to prove that she has provided informed consent, the minor must first prove that she has the capacity to do so. Under the Belgian law, a psychologist must determine the minor’s capacity to make an end-of-life decision, while in the Netherlands, capacity seems to be presumed in minors that reach certain ages and is therefore more akin to the common law rule of sevens.135

Because court involvement in a minor’s end-of-life decision is inevitable, it should be required that a psychologist make a determination of the minor’s capacity. This would give the court a disinterested party’s opinion of that capacity, which is necessary in proceedings that have the potential to be highly charged and emotional. Although the age of a minor does not necessarily speak to capacity, in order to make the right to refuse lifesaving medical treatment more agreeable to American jurisprudence, the right should only be available to minors who are not close to the age of majority unless the minor meets additional criteria that help demonstrate capacity to give informed consent. These criteria may include a requirement, such as the one in the Netherlands, that minors under the age of sixteen have the approval of their parents to refuse the treatment.

Perhaps the most important factor in assessing capacity would be a determination that a refusal of treatment was made voluntarily. One of the primary concerns that opponents of any child euthanasia law have is that it is merely a legalized version of infanticide.136 To avoid the possibility that the law would be used in this way, the psychologist making the minor’s determination of capacity should also make an independent determination of voluntariness by observing the interactions between the minor and the consenting parent. This would help ensure that the minor has not been coerced into making the decision to refuse lifesaving medical treatment. The minor’s physician should also weigh in on this evaluation because the physician will likely have had ample interactions with both minor-patient and parent, and he or she will have insight based on observations of the relationship. If the expert testimony suggests that a parent has unduly influenced a minor child into refusing treatment, the state’s child welfare system would need to become involved if it were not involved already. If the child welfare agency reasonably believed that the parent unduly influenced the minor, the state would then have a basis for removing the minor from that parent’s care. Substantiated allegations of this unlawful influence could appropriately lead to criminal charges.

III. Conclusion

Minors should have the right to refuse lifesaving treatment based on their right to bodily integrity if they can show that it is in their best interests. A minor can prove that refusal is in his or her best interest by giving evidence of the terminality and incurability of the diagnosed illness, which must cause him or her great suffering. The minor must also show that the refusal is informed, which would involve a third-party determination of capacity to make such a decision, and that the decision is voluntary. Limiting the circumstances under which a minor may refuse such treatment in this way may prove acceptable under American law and, if accepted, would open the door to establish a robust right for any person to refuse lifesaving treatment.

Minors’ rights over their bodies should not be contingent on their age. As the Illinois Supreme Court pointed out, the age of majority “is not an impenetrable barrier that magically precludes a minor from possessing and exercising certain rights normally associated with adulthood.”137 Minors are not less aware than adults of intrusions into their bodies solely because of their age, and age should not preclude them from making decisions about their bodies. The mature minor doctrine should ultimately be available to all minors in all situations, and they should enjoy the most freedom from state interference and intrusion. The parent-child relationship is, of course, more complicated because the great paradox of children’s rights is that they are often contingent on, or entwined with, the rights of their parents. Children, however, are not merely an extension of their parents, and if the State is able to recognize that in certain contexts—such as in termination of parental rights proceedings—then it should also apply in the context of medical decisions.


1. Jodi Picoult, My Sister’s Keeper 389–90 (2004).

2. See Amy T.Y. Lai, To Be or Not to Be My Sister’s Keeper?, 32 J. Legal Med. 261 (2011); Michele Goodwin, My Sister’s Keeper?: Law, Children, and Compelled Donation, 29 W. New Eng. L. Rev. 357 (2006).

3. Picoult, supra note 1, at 19–21.

4. Id. at 377–78.

5. See Shawna Benston, Not of Minor Consequence?: Medical Decision-Making Autonomy and the Mature Minor Doctrine, 13 Ind. Health L. Rev. 1, 3 (2016).

6. See infra Part I.A.

7. 431 P.2d 719 (Wash. 1967).

8. Id. at 721.

9. Id.

10. Id. at 723.

11. 422 P.2d 812 (Wash. 1967).

12. Id. at 814.

13. Seibly, 431 P.2d at 723.

14. 724 S.W.2d 739 (Tenn. 1987).

15. Id. at 748.

16. Statutes that grant minors certain rights to consent to medical treatment are sometimes called “medical emancipation” statutes. Medical emancipation can be either general or limited according to the structure of the statute. See Sharon Smith, The Medical Emancipation of Minors: A California History, 11 J. Contemp. Legal Issues 637 (1999), for an example of how these statutes may differ.

17. Doriane Lambelet Coleman & Philip M. Rosoff, The Legal Authority of Mature Minors to Consent to General Medical Treatment, 131 Pediatrics 786, 790–91 tbl.1 (2013).

18. Ala. Code § 22-8-4 (2017).

19. Del. Code Ann. tit 13, § 707(b)(5) (West 2017).

20. Coleman & Rosoff, supra note 17, at 790–91 tbl.1.

21. N.C. Gen. Stat. Ann. § 90-21.8(e)(2) (West 2017).

22. Id. § 90-21.5(b).

23. Id. § 90-21.5(a)(i)–(iv).

24. Id. § 90-21.5.

25. In re Doe, 973 So. 2d 548, 553 (Fla. Dist. Ct. App. 2008).

26. 705 N.E.2d 1155 (Mass. App. Ct. 1999).

27. Id. at 1157.

28. The Massachusetts Supreme Judicial Court authoritatively introduced this list in In re Guardianship of Roe, 421 N.E.2d 40 (Mass. 1981).

29. In re Rena, 705 N.E.2d at 1157.

30. Id.

31. Id.

32. Id.

33. Id.

34. Baird v. Att’y Gen., 371 Mass. 741, 754 (1977).

35. Coleman & Rosoff, supra note 17, at 790–91 tbl.1.

36. Derek Kroft, Informed Consent: A Comparative Analysis, 6 J. Int’l L. & Prac. 457, 459 (1997).

37. Lawrence Schlam & Joseph P. Wood, Informed Consent to the Medical Treatment of Minors: Law and Practice, 10 Health Matrix 141, 148 (2000).

38. Id. at 149–50.

39. Cardwell v. Bechtol, 724 S.W.2d 739, 749 (Tenn. 1987).

40. Id. at 741–42.

41. Id. at 741.

42. The rule of sevens is a common law rule of capacity that states that under the age of seven, a minor lacks capacity; between the ages of seven and fourteen, there is a rebuttable presumption of no capacity; and between the ages of fourteen and twenty-one, there exists a rebuttable presumption of capacity. Id. at 745.

43. Id. at 755.

44. Id. at 748.

45. Id.

46. Kroft, supra note 36, at 462.

47. 549 N.E.2d 322 (Ill. 1989).

48. Id. at 323.

49. Id.

50. Id.

51. Id. at 328.

52. Id.

53. 705 N.E.2d 1155 (Mass. App. Ct. 1999).

54. 140 P.3d 1167 (Or. Ct. App. 2006).

55. See supra Part I.A.1.

56. In re Rena, 705 N.E.2d at 1157.

57. Id.

58. In re Connor, 140 P.3d at 1170.

59. 569 A.2d 1202 (Me. 1990).

60. Id. at 1202–03.

61. 534 A.2d 947 (Me. 1987).

62. In re Connor, 140 P.3d at 1205.

63. Id.

64. Id. at 1204.

65. Id. (quoting In re Gardner, 534 A.2d at 953).

66. Connolly v. Bd. of Soc. Work Licensure, 791 A.2d 125, 128 n.4 (Me. 2002).

67. 112 A.3d 158 (Conn. 2015).

68. Id. at 159.

69. Id. at 159–60, 163–64.

70. Id. at 163.

71. Id. at 161–62.

72. Id. at 162–63.

73. Id. at 161.

74. Id. at 162–63.

75. Id. at 163.

76. Id. Many of the cases mentioned earlier in this note were accompanied by state child protection intervention.

77. Id.

78. Id. at 164.

79. Id.

80. Id.

81. Id.

82. Id.

83. Id. at 165.

84. Id.

85. Id.

86. Id. at 171.

87. Id. at 167–68.

88. Id. at 168.

89. Id. at 172.

90. Id.

91. 342 U.S. 165 (1952).

92. See Christyne L. Neff, Woman, Womb, and Bodily Integrity, 3 Yale J.L. & Feminism 327, 338 n.60, 339 (1991).

93. Id. at 327.

94. Union Pac. Ry. Co. v. Botsford, 141 U.S. 250, 251 (1891): “No right is held more sacred, or is more carefully guarded by the common law, than the right of every individual to the possession and control of his own person, free from all restraint or interference of others, unless by clear and unquestionable authority of law.”

95. 505 U.S. 833 (1992).

96. 410 U.S. 113 (1973).

97. Casey, 505 U.S. at 857. Casey is considered the case that “fixed” the legal recognition of abortion rights.

98. Neff, supra note 92, at 342.

99. 497 U.S. 261 (1990),

100. Id. at 269.

101. Id. (quoting Schloendorff v. Soc’y of N.Y. Hosp., 105 N.E. 92, 93 (N.Y. 1914)).

102. Id. at 281.

103. Id. at 313 (Brennan, J., dissenting).

104. Id. at 315.

105. B. Jessie Hill, Constituting Children’s Bodily Integrity, 64 Duke L.J. 1295, 1302–03 (2015).

106. See id. at 1304 (discussing cases where a minor’s right to bodily integrity against the state has been applied in contexts outside schools and detention centers).

107. Id.; In re E.G., 549 N.E.2d 322, 326 (Ill. 1989).

108. Hill, supra note 105, at 1304–05.

109. 428 U.S. 52 (1976).

110. Hill, supra note 105, at 1305.

111. Eur. Parl. Ass., Resolution 1952, Children’s Right to Physical Integrity (2013).

112. Id. ¶ 3.

113. 1 U.N.T.S. 11.

114. Id.

115. Radhika Rao, Property, Privacy, and the Human Body, 80 B.U. L. Rev. 359, 387–89 (2000).

116. Belgium’s Parliament Votes Through Child Euthanasia, BBC News (Feb. 14, 2014),

117. Chandrika Narayan, First Child Dies by Euthanasia in Belgium, CNN (Sept. 17, 2016),

118. Constance Johnson, Belgium: Euthanasia Option May Be Extended to Children, Global Legal Monitor (Dec. 17, 2013),​-option-may-be-extended-to-children.

119. Id.

120. Nicolas Boring, Belgium: Removal of Age Restriction for Euthanasia, Global Legal Monitor (Mar. 11, 2014),​-restriction-for-euthanasia.

121. Id.

122. Belgian Senate Votes to Extend Euthanasia to Children, BBC News (Dec. 12, 2013),

123. See André Janssen, The New Regulation of Voluntary Euthanasia and Medically Assisted Suicide in the Netherlands, 16 Int’l J.L., Pol’y & Family 260 (2002).

124. Id. at 261.

125. Id.

126. Id.

127. Id.

128. Id. at 265.

129. Id.

130. Id.

131. Id.

132. See supra Part I.A.1.

133. This is part of the Massachusetts analysis of a child’s best interests. See id.

134. Benston, supra note 5, at 8.

135. See supra note 42 and accompanying text.

136. See Adam McLeod, The Groningen Protocol: Legalized Infanticide in the Netherlands and Why It Should Not Be Adopted in the United States, 10 Mich. St. J. Med. & L. 557 (2006).

137. In re E.G., 549 N.E.2d 322, 325 (Ill. 1989).

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Stephanie S. O’Loughlin

University of Connecticut Law School, J.D. 2018; judicial law clerk, Mashantucket Pequot Tribal Nation, Mashantucket, Connecticut; admitted to practice in Connecticut and the Mashantucket Pequot Tribal Nation.