To date there is no research to document the frequency with which arguably mature minors might be receiving LSMT against their wishes. We therefore surveyed the medical directors of the eighteen pediatric ICUs in California that are approved by California Children's Services. Sixteen of the eighteen medical directors were interviewed. None of the medical directors had ever seen a written advance directive used by a patient less than eighteen years of age and all of them cared for many patients in the 15 to 17 year old age range. Thirteen directors could recall at least one occasion when they had been providing intensive care to an adolescent patient against that patient's own wishes. It seems reasonable to conclude that at least in California, the current medical system precludes minors of fifteen years and older, some of whom would be developmentally capable of understanding their medical condition, from executing an advance directive. It also permits these patients to be forced to receive LSMT. Many of these patients are at risk for the paralyzed but conscious type of death that we described in our prologue.Google Scholar

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We will use the terms “minor” and “child” interchangeably. A “mature minor” is a child, generally an adolescent, who has decision making capacity.Google Scholar

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See Cruzan v. Director, Missouri Department of Health, 497 U.S. 261 (1990) (Justice Brennan dissenting, joined by Marshall and Blackmun). “The right to be free from unwanted medical attention is a right to evaluate the potential benefit of treatment and its possible consequences according to one's own values and to make a personal decision whether to subject oneself to the intrusion. Id. at 309. [emphasis added].Google Scholar

See American Academy of Pediatrics Committee on Bioethics, “Guidelines on Forgoing Life-Sustaining Medical Treatment,” Pediatrics 93 (1994): 532–36 [hereinafter AAP Guidelines on Forgoing LSMT] “The burdens of LSMT may include intractable pain; irremediable disability or helplessness; emotional suffering; invasive and/or inhumane interventions designed to sustain life; or other activities that severely detract from the patient's quality of life. (The phrase “quality of life” refers to the experience of life as viewed by the patient, i.e., how the patient, not the parents or health care providers, perceives or evaluates his or her existence. …)” Id. at 533.Google Scholar

See Meisel, supra note 2, at 125. “[m]inors are de jure incompetent by virtue of their age.”Google Scholar

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The only other potential physical clue to the patient's state of mind, their tears, is rarely a useful sign in the ICU where standard practice is to keep the patient's eyes frequently lubricated with ointment or artificial tears and taped shut to prevent severe abrasions of the eyeball surface.Google Scholar

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Because it is impossible, even in the most detailed document, to anticipate all possible medical treatment decisions, some have advocated having individuals list their personal “values history.” Others have recommended that patients describe their goals of treatment. This approach to an advance directive is designed to instruct physicians and patient surrogates to make treatment decisions in accordance with the patient's values and goals of treatment, even if a given specific medical situation was not foreseen by the patient when she executed her advance directive. See, for example, Orentlicher, D., “The Limitations of Legislation,” Maryland Law Review 53 (1994): 1255–1305, at 1258–59.Google Scholar

See, for example, Silverman, H.J. et al., “Implementation Of The Patient Self Determination Act In A Hospital Setting: An Initial Evaluation,” Archives of Internal Medicine, 155 (1995): 502–510. This survey finds only 15% of severely ill patients execute advance directives.Google Scholar

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Id. at 136. “The Commission believes that, when possible, decision making for incapacitated patients should be guided by the principle of substituted judgment, which promotes the underlying values of self-determination and well-being better than the best interests standard does.”Google Scholar

For a list of state durable power of attorney and living will statutes and a description of their provisions concerning the immunity of attending physicians from criminal and civil liability for complying with medical treatment decisions written in an advance directive or delivered through an agent, see, Leiter, R., National Survey Of State Laws, 3^rd ed., (Detroit: Gale Research, 1999): at 491–520 (durable power of attorney) and 527–556 (living wills).Google Scholar

Cruzan, 497 U.S. 262, at 286–87(1990).Google Scholar

The Patient Self-Determination Act (PSDA) was passed as part of the Omnibus Budget Reconciliation Act of 1990, P.L. 101–508, § 4206,104 Stat. 1388. The key provisions of the PSDA are contained in 42 U.S.C.S. § 1395cc(a)(1)(Q); 1395cc(f)(1); 1395mm(c)(8); 1396a(a)(57)-1396a(a)(58); 1396a(w) (USCS Supp. 2000)Google Scholar

See id. at 1396a(58).Google Scholar

See id. at § 1395cc(f)(1)(A)(i), requiring hospitals and health care facilities to provide information concerning any state law relating to the patient's right to accept or refuse medical treatment that is recognized by the courts of the state, as well as an explanation of any right to die statue, durable power of attorney, or other relevant statute. For a summary of the Act's requirements, see Furrow, B.R. et al., Health Law, (St. Paul, Minn.: West, 1995): at 768–70.Google Scholar

Leiter, supra note 32, at 491–520 (durable power of attorney) and 527–556 (living wills).Google Scholar

At common law the right to refuse medical treatment is based on the right to control one's own body, to self-determination and to freedom from invasion of bodily integrity. See Meisel, supra note 2, at 37–77, for a comprehensive review of the legal foundations of the right to die.Google Scholar

The New Jersey Supreme Court based its decision in the famous Quinlan case on the constitutional right to privacy. See Quinlan, supra note 4, at 663. However, the U.S. Supreme Court, in its first and only ruling in this area, based the right to refuse life sustaining medical treatment on the Fourteenth Amendment's guarantee of personal liberty. See Cruzan v. Director, Missouri Department of Health, 497 U.S. 261 (1990). See also, Meisel, supra note 2, vol. 1 at 61–64.Google Scholar

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In other areas, such as criminal law or the competency of minors to testify as witnesses, the common law often applies the Rule of Sevens, under which minors under the age of 7 are irrebuttably presumed incompetent, minors between 7 and 14 were rebuttably presumed incompetent, and minors from 14 to 21 were rebuttably presumed competent. See, e.g. Cardwell v. Bechtol, 732 S. W 2d 739, at 745 (Tenn. 1987).Google Scholar

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“To be valid, any consent must be an ‘informed’ one, and it must be given by a person with the requisite legal capacity. Thus, a physician who proceeds with what he considers to be treatment in conformity with the best interests of his minor patient, at that patient's request and with his agreement, still might be proceeding without legal consent because the minor may lack capacity to consent because of his age.” Wadlington, W., “Minors and Health Care: The Age of Consent,” Osgoode Hall Law Journal. 11 (1973): 115–25.Google Scholar

For a discussion of the emergency doctrine, see Holder, A.R., Legal Issues in Pediatrics and Adolescent Medicine. 2nd ed. (New Haven: Yale University. Press, 1985): at 125–26.Google Scholar

See Rozovsky, F.A., Consent to Treatment: A Practical Guide. (Boston: Little, Brown, 1990): at 260.Google Scholar

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See “American Academy of Pediatrics: Informed Consent, Parental Permission, and Assent in Pediatric Practice,” Pediatrics, 95 (1995): 314–317, at 316. The AAP admonishes parents and physicians against possible “abuses of raw power over children when ethical conflicts occur” in conflicts over decisions with the highest stakes, “the initiation, withholding, or withdrawing of life-sustaining treatment” and states that “…no one should solicit a patient's views without intending to weigh them seriously.” Id. The AAP has advised physicians to give “considerable weight to the feelings minors may have before losing the capacity to communicate clearly regarding LSMT,” and to respect any form of advance directive as “strong evidence of a patient's wishes.” AAP Guidelines on Forgoing LSMT, supra note 6, at 535.Google Scholar

“The common law rule was and is that treatment of a minor, even without negligence and where the treatment led to a satisfactory result but for which the parents did not consent, gave rise to an action for assault and battery brought by the parents.” Holder, A.R., Legal Issues in Pediatrics and Adolescent Medicine. 2nd ed. (New Haven: Yale Univ. Press, 1985): at 124–25.Google Scholar

Powers v. Floyd, 904 S.W. 2d 713 (Tex. App., 1995), citing Macky v. Lucey Products Corp., 239 S.W. 2d 607 (Tex., 1951). The Powers case deals with a minor's right to consent to medical treatment in the abortion context.Google Scholar

See Weir, R. F. Peters, C., Affirming the Decisions Adolescents Make about Life and Death. Hastings Center Report, 27 no.6, (1997): 29–34, at 31. For a discussion of the competence of adolescents, see Weithorn, L. and Campbell, L.S. “The Competency of Children and Adolescents to Make Informed Treatment Decisions,” Child Development 53 (1982): 1589–98.Google ScholarPubMed

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Fleischman, A.R. et al., “Caring for Gravely Ill Children,” Pediatrics, 94 (1994): 433–439, at 434. The group also concluded that if such a child “voiced specific wishes prior to losing capacity, we believe the substituted judgment standard is applicable and supports respect of those wishes.”Google Scholar

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See Holder, A., “Special Categories of Consent: Minors and Handicapped Newborns,” Treatise on Health Care Law (New York: M. Bender, 1991, Supp. 1999): Vol. 3, ch.19, §19.03[3][c].Google Scholar

At least three states have adopted the mature minor exception to the parental consent requirement. This exception may give minors the right to consent to or refuse certain medical treatment. See In re E.G. 549 N.E.2d 322 (Ill. S. Ct., 1989); Belcher v. Charleston Area Medical Center, 422 S.E.2d 827 (W. Va, 1992); Cardewell v. Bechtol, 724 S.W. 2d 739 (Tenn., 1987). In addition, Alabama allows minors 14 years or older to consent to medical treatment. See Ala. Code 1975 sec. 22-8-4. It is unclear whether or how Alabama's law would apply in a situation where a minor wishes to refuse LSMT and her parents want her to have it.Google Scholar

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For a discussion of these exceptions, see Hawkins, L.A., “Living-Will Statutes: A Minor Oversight,” Virginia Law Review. 78 (1992): 1581–1615, at 1586; Rosato, J.L., “The Ultimate Test of Autonomy: Should Minors Have a Right to Make Decisions Regarding Life-Sustaining Treatment?” 49 Rutgers Law Review 49 (1996): 1–103, at 25; Wadlington, W., “Children: Tensions Between Parent, State, and Child,” University of Illinois Law Review 1994 (1994): 311–336, at 323–24.Google Scholar

See Belcher v. Charleston. 422 S.E. 2d 827, at 835 (W. Va. 1992), quoting Fay Rozovsky, A., Consent to Treatment, sec. 5.2, 2d ed. (1990), emphasizing that exceptions for medical emergencies, the emancipated minor, and the mature minor had already made an “inroad” into the traditional common law requirement that parental consent to medical treatment was always required. They attributed this “more enlightened attitude toward the minor” to case law and legislative action and suggested “recognition that minors who are mature may be involved in the medical decisions that affect their livelihood.”Google Scholar

See, for example, Novak v. Cobb County-Kennestone Hospital Auth. 849 F. Supp 1559 at 1576 (Ga., 1994), aff'd., 74 F.3d 1173 (11th Cir. Ga. 1996) “These exceptions allow minors who are married, pregnant or have children the power to consent to medical treatment for themselves, their spouses and their children. Rather than support plaintiffs' position, however, these exceptions undermine it. If minors, “mature” or otherwise, possessed the power to consent to and/or refuse medical treatment, there would be no need for these specific statutory exceptions.”Google Scholar

See Wadlington, W., Children: Tensions Between Parent, State, and Child. University of Illinois Law Review 1994 (1994): 311–336, at 323.Google Scholar

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Bellotti v. Baird, 443 U.S. 643 (1979). For further discussion of a minor's right to abortion, see Kramer, D.T., Legal Rights of Children, 2nd ed. (Colorado Springs: McGraw-Hill, 1994): at 649–658. For a detailed bibliography of law review articles on the topic of minors and abortion, see id. at 650, note 387.Google Scholar

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“If the preferences of an LSMT patient who is a nonemancipated but mature minor can be ascertained, such preferences should be given great weight in determining what is in the minor's best interest.” Coordinating Council on Life-Sustaining Medical Treatment Decision Making by the Courts. Guidelines for State Court Decision Making in Life Sustaining Medical Treatment Cases, Revised 2nd ed., (St. Paul, Minn: West, 1993). Guideline 23, at 115. [hereinafter Coordinating Council]. See also Commentary: “A surrogate decision maker evaluating what is in the minor's best interests should attempt to determine whether the minor has expressed a preference regarding LSMT … Where this preference reflects mature consideration on the part of the minor, the expressed preference should be given great weight.” Id. at 116.Google Scholar

See Meisel, supra note 2, Vol. 2 at p. 276–79.Google Scholar

For a discussion of the origins of the doctrine, see Wadlington, supra note 43 at 117.Google Scholar

For example, see, In re E.G. 549 N.E.2d 322 (Ill. S. Ct., 1989); In re Rosebush, 491 N.W.2d 633 (Mich. App., 1992); In re Swan, 69 A.2d 1202 (Me., 1990); Belcher v. Charleston Area Medical Center, 422 S.E.2d 827 (W. Va., 1992).Google Scholar

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See Traugott, I. and Alpers, A., “In Their Own Hands: Adolescents' Refusals of Medical Treatment,” Archives of Pediatric and Adolescent Medicine 151 (1997): 922–927. The three adolescent patients they present were seriously ill and “recourse to the judicial system may have been impractical.” Id. at 927Google Scholar

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See, for example, O.G. v. Baum, 790 S.W. 2d 839, at 840–42 (Tex. Ct. App. 1990), (Sixteen year old Jehovah's Witness refused, with his father's agreement, blood transfusions deemed necessary by minor's physician. The court concluded that Texas had not adopted the mature minor standard and thus would not allow minor to refuse transfusions on his own behalf.); See also, Opinion of the Attorney General of Louisiana, No. 88-232 (Nov. 16, 1988). (A mature minor may consent to treatment, but may not refuse it over his parents' objections.); Novak v. Cobb-County-Kennestone Hospital Auth., 849 F. Supp 1559 at 1576 (Ga., 1994), aff'd., 74 F.3d 1173, 1996 (11th Cir. Ga. 1996) (The mature minor exception is not recognized in Georgia.); Kun, J.M., Rejecting the Adage “Children Should be Seen and Not Heard—The Mature Minor Doctrine,” Pace Law Review 15 (1996): 423–462, at 439–42 (discussion of O.G. v. Baum)Google Scholar

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See, for example, Brewster, supra note 87, at 779–780; Penkower, supra note 88; and Ross, L.F., “Arguments Against Health Care Autonomy for Minors,” Bioethics Forum, 11 no. 4 (1995): 22–26, at 24. These authors never discuss the term life sustaining medical treatment, nor do they make the distinction between life saving and life sustaining medical treatment. Even strong supporters of the mature minor's right to make life and death medical decisions confuse life saving medical treatment and LSMT. See, for example, Rosato, supra note 67, at 68. See also, Traugott, supra note 92, at 924.Google Scholar

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Id. at 1596.”… the living-will decision is one in which the benefits and costs are themselves dependent upon personal values.”Google Scholar

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Cardwell v. Bechtol, 732 S. W. 2d 739 at 748 (Tenn. 1987). This formulation was followed in Belcher, supra note 89, at 836.Google Scholar

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See Midwest Bioethics Center Task Force on Health Care Rights for Minors, supra note 58, at A/3 “An individual with decisional capacity has the ability to make a specific decision, i.e., the ability to understand relevant information, to reflect upon it and to communicate the decision (verbally or non-verbally) to providers.”Google Scholar

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These comparisons have been lucidly pointed out by the E.G. court: “… the Juvenile Court Act presupposes a “sliding scale of maturity” in which young minors can be deemed mature enough to possess certain mental states and be tried and convicted as adults. … When a minor is mature enough to have the capacity for formulate criminal intent, both the common law and our Juvenile Court Act treat the minor as an adult.” In re E.G. 549 N.E. 2d 322, at 326 (Ill. 1989)Google Scholar

For a detailed discussion of judicial determinations of minors' competence to make a variety of decisions, including abortion, medical treatment, political expression and Miranda rights, see Rosato, supra note 113, at 50–54. 1240 (1999)Google Scholar

See, for example, In the Matter of A.M.P. 708 N.E.2d 1235, at 1240 (N.J. 1999), in which the court found that a hearing must be held to determine whether a patient is a mature minor who is competent to make a reasoned decision to undergo electroshock therapy.Google Scholar

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If one or both parents or the patient's physician were opposed to a mature minor's choice it would be exceedingly difficult for the patient to reach the court, even under our proposed solution. If the mature minor's right to make autonomous decisions about LSMT were more clearly delineated, a minor might then have recourse to an agency, such as child protective services, to assist her in getting into court.Google Scholar

See Traugott, supra note 92, at 926. Pediatricians are already accustomed to petitioning the court when parents refuse consent to life saving medical treatment on a religious basis. See also, Hawkins, S.D. supra note 100, at 2087, note 88, for citations to a number of court-ordered transfusion cases.Google Scholar

The need for anticipatory decision making has been emphasized: “Moreover, when specific life-sustaining measures will predictably become an issue in a specific clinical context, it obviously makes sense to discuss those measures in advance (e.g. mechanical ventilation for patients with severe emphysema).” Brett, A.S., “Limitations of Listing Specific Medical Interventions in Advance Directives,” JAMA. 266 (1991): 825–828, at 828.CrossRefGoogle Scholar

The AAP asserted that the substituted judgment standard should be used “for children who are emancipated or mature when their wishes are known or may be deduced.” AAP Guidelines on Forgoing LSMT, supra note 6, at 535. See also, In re Rosebush, 491 N.W. 2d 633, at 637 (MI. 1992): “[I]n making decisions for minors or other incompetent patients, surrogate decision makers should make the best approximation of the patient's preference on the basis of available evidence. … Under the proper circumstances—where a patient was formerly competent or is a minor of mature judgment—the substituted judgment standard is an appropriate test.” Id. at 639.Google Scholar

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One of the reasons the U.S. Supreme Court gave for insisting that a pregnant minor be able to go directly to the court without notifying her parents is that parents who were opposed to abortion would block their child's access to the court. See Bellotti v. Baird, 443 U.S. 622, at 647–48 (1979)Google Scholar

Although an independent advocate is the best legal representation for a minor, she will have difficulty seeking out and paying for an attorney. As medical treatment cases are civil proceedings, there may be no constitutional right to representation. See Hawkins, S.D. supra note 100, at 2104. For an example of a court that does appoint an attorney in cases involving the withdrawal of LSMT from minors, see Los Angeles County Superior Court Rule 17.4. Life Sustaining Medical Treatment. (Before ordering the withdrawal of LSMT for minors subject to juvenile court jurisdiction the court must appoint an attorney to represent the minor, if the minor does not have an attorney.) id. at 17.4(a) and 17.4(g)(1).Google Scholar

See Mark, L.B., “The Competent Child's Preferences in Critical Medical Decisions: A Proposal for its Consideration,” Western State University Law Review 11 (1983): 25–58, at 52–53.Google Scholar

See Coordinating Council, supra note 76, at 87–88, recommending that an exception to the “general rule against viewing the patient” occur when the court needs to address “the competency of the patient” and the patient is too ill to come to the courthouse.Google Scholar

Of course, the PSDA is not a panacea. “The concern has been expressed that the PSDA is “motivated less by a genuine respect for actual informed patient choice than by the feeling that physicians and hospitals now need not trouble themselves in making truly critical and sometimes agonizing decisions.” Anecdotal evidence suggests that the statute has not had the effect of encouraging physicians to initiate end of life discussions with patients.” Meisel, supra note 2, vol 2 at 54, citing Loewy, E.H., “Advance Directives and Surrogate Laws: Ethical Instruments or Moral Cop-Out?” Archives of Internal Medicine 152(1992): 1973–76, at 1973.Google Scholar

Special Report, Sources of Concern about the Patient Self-Determination Act, N. Engl. J. Med 325 (1991): 1666–71, at 1670. “The PSDA's requirements must become not a ceiling but a floor.”Google Scholar

At least two state courts have concluded that minors have a right to have their previously stated end-of-life preferences honored. In In re Chad Swan, 569 A.2d 1202,1206 (ME. 1990) the Maine court gave authority to a seventeen year old's verbally expressed, but “well-formed desires as to medical treatment.” (a previously stated desire to avoid LSMT). The court considered Chad Swan's age as only one factor in evaluating the seriousness of his stated preferences. Id. at 1205. In In re Rosebush, 491 N.W. 2d 633, (MI. 1992) the Michigan Court of Appeals concluded that “[t]he advance directive of a mature minor, stating the desire that life-sustaining treatment be refused, should be taken into consideration or enforced when deciding whether to terminate the minor's life support treatment or refuse medical treatment.” Id. at 636, note 4. Nor can hospitals subject to the PSDA's requirements assume that their advance directive and/or durable power of attorney statutes are the only acceptable means for stating one's end-of-life preferences. See, for example, Conservatorship of Drabick, 245 Cal. Rptr. 840 (1988), holding that neither California's Natural Death Act nor its Durable Power of Attorney for Health Care statute were the exclusive means by which a person could express legally cognizable preferences about LSMT.Google Scholar

42 USCS §1395cc(f)(1)(E).Google Scholar

See Batterman, supra note 122, at 673; and Lonowski, S.C., “Recognizing the Right of Terminally-Ill Mature Minors to Refuse Life-Sustaining Medical Treatment: The Need for Legislative Guidelines to Give Full Effect to Minors' Expanded Rights”, University of Louisville Journal of Family Law 34 (1996): 421–45, at 443.Google Scholar

See Belcher, supra note 89. Physician was found to have a duty to obtain consent of a mature minor patient before issuing a DNR order.Google Scholar

For a review of the landmark cases involving discontinuing LSMT, see Burnell, G.M., Final Choices (New York: Insight Books, 1993): at 215–16 and 220–222.Google Scholar