Angela Roddey Holder
CONSENT TO TREATMENT: WHO DECIDES?
Pediatricians should remember that the child, not the parent, is the patient and that their professional, ethical, and legal obligations are to the child. While parents in our society have been given wide latitude to raise children as they see fit, there are limits at which the state can appropriately intervene: While parents may spank their children, child abuse is not permitted. While parents may choose a variety of educational resources for their children—from home schooling to a variety of religious schools to private and public schools—the state does demand, at least in theory, that children achieve some level of literacy. Pediatricians, therefore, care for children and work with their parents in a social context that requires their intervention in ways that may range from working with parents to make sure they understand a medically complex situation to notifying the state of neglect or abuse.1 This chapter focuses on three areas of complexity in which the law, ethics, and clinical judgment intertwine: (1) Who makes decisions when it comes to caring for children and adolescents? (2) Who is able to refuse treatment—the child and/or the parent for the child? and (3) When is confidentiality an issue for an older child or adolescent?
The United States has become a nation of diverse cultures; thus, sensitivity toward and understanding of child-raising practices from other parts of the world are increasingly important. While some practices may seem abusive in the context of American cultural values, physicians should realize that the intent behind the practices is almost always benevolent and not abusive. Explanations and education, not legal interventions, may be the solution to the problem.2 Physicians who care for children should always remember that the ethical concept of “respect for persons” does not have a minimum age. While demonstrating respect for a 16 year old may be quite different from demonstrating respect for a 6 year old, which is different from the respect due an infant, the principle is the same at any age.3
While parents, of course, make decisions about their children’s health care and all other aspects of the children’s lives, one of the more dramatic developments in US legal history within the last 50 years has been courts’ recognition of the rights of adolescents to make decisions for themselves—about health care and in a variety of other contexts.4 Before the 20th century, children (until recently, all those under 21) were considered chattels of their fathers, and appropriate and beneficial treatment of a child without the father’s permission was considered a wrong to him and his right to control his child. Thus, the father (not the mother) could sue the physician for treating his child correctly but without his permission. Before child labor laws removed children from their jobs in factories, fathers had the right to the entirety of their children’s salaries. Child abuse was not a crime in the United States in 1900, and mandatory reporting of abuse was not required in most states until the 1960s. Since that time, courts have increasingly recognized that children and adolescents have rights separate from those of their parents.
Whether it is a parent giving informed consent for treatment of a small child, an adolescent consenting to treatment for herself, or an adolescent and his parents deciding together about a suggested therapy, all are “giving informed consent.”5 Elements of informed consent to medical treatment include a description of the proposed procedure, why it is necessary, the risks and the benefits of the proposed therapy, and what alternatives are available. In many cases, “an alternative” is to do nothing, and, if applicable, the consequences of doing nothing should be explained to the patient.
Parents are almost always asked to consent to treatment of a small child except in case of an emergency when parental consent cannot immediately be obtained. “Emergencies” are broadly construed by courts and include situations in which a child is in pain, not just cases of life-threatening illness or injury. For example, if a child in day care falls and cuts her head and is brought to the emergency department by a teacher, someone should try to call her parents, of course, but if they are not immediately available, the child’s cut should be sutured. It is not only unnecessary but bad pediatric practice to require the child to wait until her parent can be found. On the other hand, if a child in second grade is brought to a physician by his teacher, who asks for a diagnosis of attention deficit disorder and a prescription for medication, the child most certainly should not be seen without discussion with and permission from his parents.
Even when children are too young to be able to assent to medical care, it is respectful of them and is likely to increase their cooperation if the procedure is explained to them and they are allowed to make some choices, even if it is what color Band-Aid they get after their immunization. To the extent that the child seems to understand, explaining what is wrong with him or her, why the problem needs to be treated, and what the options are is respectful of the child’s personhood and is likely to produce increased understanding and thus cooperation. However, young children should never be given the idea that they are the decision maker or that they can refuse treatment. It is quite clear that a preadolescent child has no right to consent to or refuse medical treatment.
THE ADOLESCENT PATIENT6
Early in the 1960s, there was an epidemic of sexually transmitted infections among teenagers. Because they did not want their parents to find out that they had been sexually active, they forewent treatment rather than ask for parental consent to therapy, thus spreading the infections. All state legislatures enacted statutes allowing minors of any age to receive treatment for sexually transmitted infections without parental involvement, and in subsequent years, almost all state legislatures extended the same exemption from parental knowledge to treatment for alcohol or drug problems. In many states, statutes specifically state that parents may not be billed for these services without the consent of the patient, since the parents would discover the problem from the bill they received. In all states, it should be assumed in these cases that parents should not be notified and that payment (if any) will be from the teenager.7
As the concept of minors’ rights began to expand in the second half of the 1960s, about half the states enacted statutes permitting minors of a given age—ranging from 14 to 17—to consent to all medical or surgical treatment without parental involvement.8 After Roe v Wade legalized abortions throughout the country, however, many legislatures carved an exception for that procedure. Thus, in many states today, a 16-year-old girl can consent to brain surgery but not to a first trimester abortion. Even in those states without consent statutes, during the same time period, courts began to carve out what is known as the “mature minor” doctrine. If the patient is over 13 (or 14 in some recent cases) and the physician feels that he or she understands the reasons for the recommended therapy, what its risks and benefits are, and can give an understanding “consent” as complete as that of an adult, he or she is a mature minor. That consent can be accepted as it would be accepted from an adult patient. Although these young people should be encouraged to involve their families, if their reasons for refusal seem to be legitimate or if the treatment to be provided is virtually without risk, their refusals to involve their parents can be accepted.9,10
Sometimes these issues can be very murky, and in those instances, the physician’s own professional judgment and consensus among physicians may be helpful in deciding what to do.11 For example, although adolescents in all states may consent to diagnosis and treatment of sexually transmitted infections, do those statutes include “prevention”? For example, may a teenage girl obtain human papilloma virus vaccine without parental knowledge?12,13
Some minors may be able to consent without regard to age. In some states, high school graduates may consent, minors living away from their parents may consent, and pregnant minors may consent to their own care and, after delivering, to the care of their infants.
Emancipated minors have the legal authority to make their own decisions about all aspects of their lives, not just about medical care. Emancipated minors include those who are married, those who are in the military, and, in most states, those who are self-supporting and living away from their families. Runaways are usually by default considered to be emancipated, because if a runaway needs medical care but refuses to tell the health care team how to find his or her parents, treatment must be given.14
College students living away from home are almost always considered emancipated, even if their parents are paying their college expenses. In some states, parents and a child of 16 or older may go to court and ask for a declaration of emancipation, meaning that the parents have no further responsibility, financial or otherwise, for their child.
Almost all situations involving adolescents making medical decisions involve outpatient treatment. Hospitals are much more interested in making sure that someone will pay the bill than they are in protecting adolescent autonomy and thus usually will not admit a minor in a nonemergency situation unless parents are involved and agree to have their insurance involved or otherwise assume responsibility for payment. When emancipated minors are hospitalized, their parents have no financial responsibility for their care.15
Age may not be the only determinant of a physician’s agreement to treat an adolescent without parental involvement. A pediatrician might be perfectly willing to treat a 14 year old for a sore throat on her own, but no oncologist would be willing to treat the same 14 year old for leukemia without her parents’ involvement.
INSISTENCE ON UNORTHODOX “THERAPY” OR TREATMENTS THE PHYSICIAN THINKS ARE WRONG
Almost always, children and their parents agree with the pediatrician on the need for medical care, the physician finds their choices of therapy reasonable, and treatment proceeds. This is not, however, always the case. What is the physician’s ethical responsibility when an adolescent, parents, or both, ask the pediatrician to provide a treatment that the physician thinks is either unwise or wrong?
Suppose, for example, a 14 year old with cancer and his parents insist that the physician treat his disease with an alternative therapy such as laetrile? The assessment of the situation should include the following considerations: (1) Is the alternative dangerous? Can the physician even determine whether it might be harmful? If a parent presents a bottle of laetrile and demands that it be given to his child with cancer, the physician has no way to know what contaminants may be in the liquid, aside from the potential danger of the laetrile itself. (2) If the alternative is not dangerous and the parents and the patient are willing to accept conventional therapy as long as the alternative is added, the physician might reasonably decide to go along with their request, although she is perfectly within her legal and ethical rights to decline. (3) If the parents insist on the alternative as the only method of therapy and the alternative would not be dangerous, the child’s condition should be the first decision point. If the child is likely to recover or at least gain a long-term remission with conventional therapy, there is always the option of obtaining a court order to treat the patient. (4) If the child is dying and conventional therapy may prolong the process but will not affect the outcome, the alternative is not harmful, and the parents are desperate in their beliefs that it may help, the physician has to make a very difficult judgment call. To refuse their request and thus close the door between physician and parents, however, means that as the child is dying, she or he may have no access to the physician because the parents are too angry to call for help. (For further discussion of this topic, see Chapter 128.)
In other situations, the therapy may be acceptable, but the physician may think it is unwise for the patient. For example, a teenager may want plastic surgery for what she imagines is a defect on her nose, and the plastic surgeon realizes that her parents have been quite clear in letting her know in a variety of ways that they think she is ugly. There is nothing actually wrong with her nose. Although there is no objection to rhinoplasty in appropriate cases, in this case, since the plastic surgeon realizes that the nose is not the real problem and that family counseling is more to the point, she certainly does not have to perform the procedure.
Where there is serious disagreement between the adolescent and his parents, the pediatrician must be sure that the decision is made in the best interests of the patient, not the best interests of the parents. Suppose, for example, a 16-year-old Jehovah’s Witness accepts a needed blood transfusion to which his parents object. Of course, the patient would be transfused, but in the process, the medical team should consider the effects of this conflict on the family unit and attempt to provide support as necessary. For example, the parents might consider refusing to let the “sinful” child come home after discharge from the hospital. How can the physician help the family unit to recover?
REFUSAL OF TREATMENT: WHO DECIDES?
If a minor (of any age) has an illness or injury for which medical care can produce a cure or at least a recovery with minimal disability, courts will almost always override parental refusal. For example, if a child is hit by a car and requires surgery, but the parents refuse to allow a necessary blood transfusion because their religion does not permit it, a court will always order the transfusion to be given. In practical terms, however, a court order may also require that physical custody of the child must be secured during the treatment period. A blood transfusion during surgery is one thing, but court-ordered chemotherapy, occurring over months, might require placing the child in foster care so his parents will not respond to the order by taking him out of the country. That trauma to the parent-child relationship must be factored into the initial decision to go to court and the physicians must be quite sure that the intervention is reasonably predicted to succeed. (Parental refusal of treatment when the child’s prognosis is not good is discussed in Chapter 128.)
Adolescents may object to treatment their parents wish them to have. Short of physical restraint during the treatment, it is often best to negotiate a course acceptable to the adolescent patient if at all possible. A simple refusal may not be the real agenda, and the physician should make efforts to find out what the real problem is. A teenager who is responding well to chemotherapy and suddenly refuses to continue may want to go to her prom with hair—and helping her find and pay for a wig may resolve the treatment issue. The younger child’s or adolescent’s feelings of helplessness in the face of serious medical problems should be understood, and taken very seriously. Dealing honestly with those feelings may lessen the possibility of outright refusal.
Adolescents in most circumstances may refuse any treatment to which they can consent.16 If the proposed therapy is elective, the patient may certainly refuse. Many prolife advocates feel strongly that parental consent should be required for a minor’s abortion because they consider the girl too immature to make that choice, but very little attention has been paid to the converse situation: If a parent has the right to refuse to allow a pregnant minor to choose an abortion, logically, the same parent would have the right to insist on an abortion the pregnant minor does not wish to have. Are there any circumstances under which a physician should perform an abortion over the objection of the pregnant minor?
In general, adolescents are not allowed to refuse life-saving therapy even in circumstances where an adult patient could invoke “the right to die.” (See Chapter 128.)
DISCLOSURES TO PARENTS
Pediatricians who have long-time relationships with their patients—perhaps from hospital nursery to college entrance—must make decisions about the age and stage of maturity at which patients may legitimately demand that information be received in confidence and, in particular, not be disclosed to the patient’s parents.17 A promise of confidentiality from the physician to an adolescent patient may be the only way to obtain honest information necessary to make a correct diagnosis.18,19 In general, if a minor is capable of consent or refusal of treatment, that treatment may be given in confidence.20
Younger children probably do not understand, much less expect, confidentiality. In most cases, younger children assume that their parents know everything about them, and in the context of medical care, the parent is usually present.
Many pediatricians have developed an explicit policy in their practices about confidentiality, when it will be maintained and when parents will be notified, and patients and their parents are informed of this at an appropriate age (usually about 12) or when an adolescent is accepted as a new patient. If the parents are not willing for their child’s confidences to be respected by a physician, this conversation in advance of any conflict would put them on notice to seek another source of regular medical care. The patient, also, should understand that while there is a general adherence to confidentiality at his or her age, there are times, for example, when the teenager might be dangerous to self or others, when the parents’ need to know will override the adolescent’s desire for confidentiality. To promise, either explicitly or implicitly, that a conversation will be confidential and then to inform the parent without the adolescent’s knowledge is a clear violation of the ethical principles underlying the physician-patient relationship. It is also likely to cause mistrust of all physicians for years to come. In some families, as well, disclosure of information the adolescent wanted for good reasons to be kept confidential may in fact lead to abuse, rejection, or having the parent expel the child from the home.21
DISCLOSURES TO STATE AGENCIES
In some cases, such as child abuse or neglect, reports to state agencies are mandated. The ages for reporting vary among the states, but most “age out” the requirement by 16, if not earlier. In determining “abuse” stemming from sexual activity among adolescents, the context determines whether abuse has occurred. If a 15-year-old girl is having a sexual relationship with her 16-year-old boyfriend and the physician becomes involved when she asks for contraceptives, confidentiality is almost certainly required. If, however, the girl is 11, clearly abuse should be presumed. If the 15 year old is having a sexual relationship with her mother’s 38-year-old boyfriend, this is almost certainly statutory rape as well as “child abuse” under the criminal laws in most states. In that instance, of course, the mother will be informed of the situation by the police if not by the pediatrician.
Infectious diseases, particularly sexually transmitted diseases, are also reportable to the state, even though the adolescent patient has the right of confidentiality as to his or her parents.
DISCLOSURES TO SCHOOLS
Reports to schools may very well not be confidential. Even if the report is made to a school nurse, in some schools, principals take the position that they have the right to all information, including medical information and family information, about all the students in the school. Once the information leaves the control of the school nurse, there is nothing to prevent its dissemination to the faculty. Parents and physicians should understand that informing a school nurse about a child’s medical condition is by no means the same thing as sharing the same medical information with other physicians or clinics. In the early days of human immunodeficiency virus (HIV), this lack of privacy, coupled with demonstrated invasions of the children’s and their families’ privacy and unfair treatment and abuse in schools, caused many pediatricians to refuse to notify a school that a patient was HIV positive. Those caring for these children instead hoped that teachers understood that universal precautions were necessary in dealing with all the children.
In all circumstances, parents and adolescents should be told exactly what information is being sent to the school, and in most cases, they have the right to decline to allow the disclosure.