From Chattel to Consenter: Adolescents and Informed Consent

Abstract

Angela Holder was to give the Grover Powers Memorial Lecture at the weekly Grand Rounds conducted by the Yale Department of Pediatrics on Wednesday, May 27, 2009, but unfortunately, she died one month earlier, on April 22, leaving behind her prepared address, “From Chattel to Consenter: Adolescents and Informed Consent,” which she had regarded as the pinnacle of a remarkable career, much of it spent at Yale. As the Grover Powers honoree, the department’s highest honor, Ms. Holder was only the fourth woman of 46 recipients and the first who was not a physician. On the date scheduled for her address, tributes were presented by her son, John Holder, and her longtime colleague, Dr. Robert Levine, co-founder of Yale’s Interdisciplinary Bioethics Center. Their comments follow Angela Holder’s completed but undelivered Grover Powers address. — Myron Genel, MD, Professor Emeritus of Pediatrics

Under the common law of England and in the early years of the United States, a minor (defined as anyone under 21) was a chattel or possession of his or her father [1-4]. A father had the right to sue a physician who treated his son or daughter perfectly properly but without the father’s permission because such an intervention contravened the father’s right to control the child. Beginning in the early years of the 20th century, by the end of World War II and into the 1950s, the notion that a 16-year-old was a legally different entity from a 6-year-old gradually became law in all states.¹ The first hospital unit for adolescents was created in 1951 at Boston Children’s Hospital, and the concept of “adolescent medicine” was born [5].

As the law in this area currently defines “adolescent,” we are discussing someone 14 or older who may be (1) living at home with his or her parents; (2) Not living at home but still dependent on parents (i.e., a 16-year-old college freshman living in a dorm); (3) an “emancipated minor” who is married, emancipated by a court order, or a parent (other than in North Carolina), living away from home and self-supporting; or (4) a runaway or throwaway. At any time in this country, there are about 200,000 adolescents living on the streets with no adult supervision or involvement [6].

Regardless of the age of the patient, informed consent consists of five elements: (1) An explanation of what will happen; (2) explanation of the risks; (3) explanation of the projected benefits; (4) alternatives (including doing nothing); and (5) why the physician thinks it should be done, which I interpret as a right to know one’s diagnosis. While the doctrine of “therapeutic privilege” means that in rare cases a physician may withhold some information from an adult patient if she or he believes the patient cannot “deal with the information,” there can never be any withholding of information from an adolescent. If the patient can’t deal with the information to be presented, then parents have to be involved and give permission to treat the adolescent.

In some cases, when parents are involved, they do not want their adolescent to know his or her diagnosis. While this is usually not a good idea, it normally falls under the rubric of “professional judgment,” and the physician has every right to decide to follow the parents’ instruction if she agrees with it. In some situations, however, the adolescent must be told what his or her illness is, whether parents like it or not. For example, if a teenager is HIV positive, he or she must be told, must be instructed about safe sex, and must be asked to divulge the names of any sex partners. Parents who say, “Oh, no, don’t tell him, he would never do anything like that, so it doesn’t matter,” should be tactfully but firmly led to accept the fact that he may well have and if he hasn’t yet, he will certainly in the future. There has been at least one successful malpractice case in which the physician did not, at the request of the parents, tell his adolescent patient that he had HIV. The patient’s girlfriend caught it and sued the physician [7]. I feel sure there are many more cases like this that have been quietly settled and no one will ever hear about.

Usually, questions about adolescents giving consent to treatments that their parents don’t know about involve outpatient treatment. In the first place, hospital administrators, who are much more interested in getting paid than they are in advancing the rights of autonomous adolescents, are not going to admit for a non-emergency problem a minor whose parent has not made some sort of financial arrangement to pay for it. Secondly, in most households, if Little Herman doesn’t show up for supper or throughout the evening, someone notices and a few telephone calls later discovers that Little Herman is in the hospital.

Special Statutes

All states permit minors, usually of any age, to consent to treatment of drug or alcohol problems and “diagnosis and treatment” of sexually transmitted diseases (STDs). These statutes began in the 1960s when teenagers with STDs were afraid to tell their parents they needed treatment, so they didn’t get it and, therefore, spread their diseases. Almost all medical organizations agreed that it was necessary to provide confidential treatment to get the epidemic under control. How “under control” it is depends on how you view the fact that 12 million adolescents in the United States today have STDs [8]. Incidentally, those politicians who are currently muttering that teenagers and young adults are not only going to hell in hand baskets but are taking the whole country with them should check out the statistics on both STDs and adolescent pregnancy in 1955 — when many of these legislators were teenagers themselves — compared to today. The same principles applied to drug and alcohol problems: They would go untreated if parents had to be informed.

The current “big issue” in informed consent for adolescents involving STDs is whether statutes providing for “diagnosis and treatment” of STDs also cover prevention; in other words, is it legally permissible for a minor to get human papillomavirus (HPV) vaccine without parental knowledge? Of course, the practical difficulty is that the series of shots costs about $320, but assuming the fiscal problem is resolved, experts still disagree on whether it is necessary to obtain parental consent, as it clearly is with most vaccines. For my part, I think that when there is no clear answer to the contrary, good medical practice would indicate the vaccine should be given. The majority of my colleagues and the entire Planned Parenthood system disagree with my views, however [9-11].

Federal law (Title 10 of the Public Health Service Act of 1970) provides for confidential provision of contraceptives to those of any age who come to a federally funded family planning clinic, although from time to time various congressmen have tried to add a provision requiring parental notification, including the Reagan era “squeal rule,” which was promptly declared unconstitutional [12].

Some states have general consent statutes that say, “Any minor of X age may consent to medical or surgical care,” although most of them have made an exception for abortion, thus creating a situation in which a 16-year-old has the legal authority to consent to removal of a brain tumor but not have a first trimester abortion.

In states without consent statutes, courts have adopted the “mature minor rule,” which basically means that if a physician believes that the particular adolescent 14 or older understands the situation as well as an adult and can give the same degree of informed consent that the adult patient would, she may proceed to treat the minor without parental consent. The age and maturity of the patient, the nature of the illness, and the risks of therapy are all part of the equation. The mature minor rule normally would apply only to therapies that do not involve serious risks and does not, at this time, ever apply to investigational drugs [13]. A 14-year-old might very well come to an adolescent clinic and give consent to being treated for a sore throat; however, I doubt any pediatric oncologist would consider treating the same adolescent for leukemia without parental involvement.

Incidentally, for those of you who have to make a living, if parents do not consent to non-emergency diagnosis or treatment, they do not have to pay for it.

Abortion

The continuing legislative battles in the field of adolescent medicine are abstinence-only education and abortion. There are many legislators, both state and federal, who would like to banish abortion from U.S. law, whether the pregnant woman is 14 or 24, but they know there is very little they can do to prevent adult women from making this choice. Among these are those legislators, state and federal, who are convinced that no one of the female persuasion has enough sense to make up her own mind about anything, including her own body, and don’t think women have any business being doctors, lawyers, Episcopal bishops, generals, admirals, or any other professional who might give orders to those of the male persuasion. That group tends to be hopelessly uneducable, but some other legislators can discuss these matters rationally, and I urge all of you to engage them in discussion whenever possible.

First, if the theory of abstinence-only education were correct — that if teenagers hear something in school, they will rush right out and do it (or not do it, if Teacher told them not to) — graffiti would consist of algebraic equations. After all, they learn graffiti art at the same time they learn abstinence-only sex education. I haven’t seen any quadratic equations on the sides of buildings. In practice, abstinence-only education is clearly not achieving its goal. According to the Centers for Disease Control and Prevention (CDC), a third of U.S. girls are sexually active by 15, and 21 percent of ninth-grade girls have had sex with four or more partners.

The theory behind the minor abortion statutes in almost every state (Connecticut excepted) is that the girl is too “immature” to make up her own mind about this critical issue; thus, her parent should consent or, according to the Supreme Court, she may go to court to get permission. While judges in some states, such as Massachusetts, routinely grant permission, there are states, particularly Alabama, in which some judges have never given permission for any girl, no matter how near 18 she may be. What has never, apparently, occurred to these judges is that if the girl doesn’t have an abortion, she will have a baby, and if she is too immature to decide to abort, what sort of mother can she be? This is particularly true when you remember that her parents (except in North Carolina) have absolutely no duties to care for or support her baby, and since by the act of giving birth she has become emancipated, they have no further duty to her, either. So even if she is 13, her parents have no further duty to feed or house her, much less her baby.

While there are very few cases in which a parent wanted a girl to have an abortion and the girl wanted to continue the pregnancy, the courts so far have all held that the girl’s wishes would prevail. We have no way to know how many situations like this never go to court, the girl has the abortion, and she has had no advice from anyone that she has the right to object. In one case from Texas [14], a woman found out years after the surgery that the “operation” she had at 16 was an abortion at her mother’s request when the doctor told her mother (but not her) that she was pregnant. When she sued, the court held that she had no cause of action because her mother, not she, had the right to give informed consent. I suspect there are more situations like that than anyone will ever be able to document.

The “immaturity” alleged in girls’ inabilities to make abortion decisions contrasts remarkably with other accepted legal standards. For example, while a 14-year-old girl is “too immature” to decide about abortion, if she murders someone, she can be tried as an adult and sentenced to life in adult prison. Until the Supreme Court recently ruled against it, in many states she could have been executed. Immaturity is not a defense to any criminal charge. A recent article discusses a Pennsylvania case in which two 12-year-old girls were awaiting trial for homicide in an adult court [15]. A 17-year-old girl can fight in Afghanistan but cannot come home and have an abortion (or, for that matter, legally buy a beer.)

The right to refuse treatment is far more complex for an adolescent than it is for an adult. If an adolescent is capable of consenting to a treatment, he or she is usually capable of refusing it. Adults may refuse any treatment they choose, even if they will die without it; adolescents usually may not. If a parent wishes an adolescent to have an entirely elective procedure (such as plastic surgery) the adolescent has every right to refuse. If an ill adolescent is invited to participate in an investigational drug trial, as long as there is an alternative therapy, he or she may refuse to assent, but if there is no effective alternative and his or her parents have given permission, the teenager may not refuse. If the adolescent can find another physician (not any other sort of health care provider such as a chiropractor) who is willing to accept the adolescent as a patient and treat him or her as the patient wishes, the original physicians and the parents probably (but not certainly) could not get a court order requiring the teenager to be treated by the first physician.

In general, minors (up to their 18th birthday) have no right in principle to refuse life-saving treatment, but judges confronted with individual cases have found that if the minor involved was mature, understood the permanency of death, could articulate the reasons for wishing to stop treatment (usually a Jehovah’s Witness being kept alive by transfusions), and was not unduly influenced by his or her parents’ religious views, they would order the treatment to which the minor objected be stopped [16]. In other states, however, on apparently similar facts, courts have held that no minor may refuse life-saving treatment [17].

In no state may a minor execute a living will. Of course there are many instances, particularly in pediatric oncology, where the physician, the patient, and the parents agree to let the teen “go in peace,” stop active therapies and turn to hospice care, but if the teen is the only one who wishes to do so, he or she is likely to get treatment he doesn’t want. In that situation, many parents want to try “one more thing,” but the physician who understands the patient’s feelings and agrees with them is obligated to try to talk the parents into agreement. If unsuccessful, however, the physician either has to persist with the therapy or get a court order to stop it.

Abbreviations

STD

sexually transmitted disease

HPV

human papillomavirus

CDC

Centers for Disease Control and Prevention