++
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?