“This girl doesn’t have a uterus!” exclaimed the
resident. Soon, a small group of residents was huddled around the ultrasound of
a 15-year-old who had come into the small-town clinic for evaluation of primary
amenorrhea. “Could she have androgen insensitivity?” mused one.
“If she does, we’re not supposed to tell her.”
This was the story I heard from one of those residents. He was pretty
sure the advice his colleague recalled from medical school — that a
patient with androgen insensitivity syndrome should never be told the truth
about her condition — was out of date, and he contacted me for more
information about the ethical and legal implications of hiding this diagnosis
from an adolescent patient. (By then the patient had appropriately been
referred to a specialist. However, the residents wanted to learn from their
experience.)
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Anne Tamar-Mattis
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Along with other resources, I referred him to the American Academy of
Pediatrics policy statement Informed Consent, Parental Permission, and Assent
in Pediatric Practice. This four-page document is both straightforward and
revolutionary in explaining key concepts of consent in pediatrics, and I find
myself referring to it repeatedly in my consultations with medical providers
caring for children with differences of sex development (DSD). Unfortunately,
although the policy has been around for almost 15 years, it does not seem to
have received the exposure it deserves. Many of the doctors I meet are
unfamiliar with it. Since it has application in many of the difficult
situations that arise in treating children with DSD, I would like to review
some key concepts from the policy along with examples of how they apply in
cases of DSD.
The AAP recognizes that the concept of consent operates differently in
the pediatric context. Indeed, it suggests that the term “parental
consent” is a misnomer, suggesting “parental permission”
instead. Consent is an exercise of autonomy — true consent cannot be given
by proxy. In pediatric cases in which true consent may not be possible, it is
usually appropriate for parents to be the decision-makers. However, parents do
not have an absolute right to make these decisions for their children in the
same way that competent patients have a right to make medical decisions for
themselves. The legal and ethical legitimacy of parental decision-making grows
out of the presumption that parents will make decisions based on the
child’s best interest. The provider’s obligation is to render care
“based on what the patient needs, not what someone else expresses,”
the authors wrote.
One situation in which this principle might come into play in caring for
children with DSD is when decision-making about genital surgery is heavily
influenced by parental discomfort with the child’s atypical genitals. For
example, many providers have reported that parents who initially decide to
refuse clitoral reduction often change their minds when their child begins to
masturbate. Anthropologist Katrina Karkazis quotes one doctor who said, “I
had a little 2-year-old girl who had a very, very enlarged phallus and [the
parents] didn’t have surgery. The little girl was masturbating, and the
parents just fell apart and were back in the office the next week for
surgery!” Although this doctor may have felt the parents were making the
right decision, it is important to recognize that relieving parental discomfort
is not an ethically sound basis for subjecting a child to the risks of elective
surgery.
In addition to clarifying the basis for parental decision-making, the
AAP policy asserts that respect for the child’s dignity as a person
requires allowing pediatric patients to “participate in decision-making
commensurate with their development; they should provide assent to care
whenever possible.”
Assent is explained as an informed, developmentally appropriate and
uncoerced expression of willingness to accept the proposed care. The policy
acknowledges that children are not always rational decision-makers capable of
exercising autonomy and that therefore gaining assent may not always be
possible. However, the AAP also suggests that performing invasive procedures
without the child’s assent carries a risk for harm. This potential harm
must be weighed against the necessity and urgency of the procedure. Also, even
when it is necessary to proceed without the patient’s assent, the policy
holds that the patient should still be informed and involved in developmentally
appropriate ways.
In the case of the 15-year-old with androgen insensitivity, there was no
immediate consideration of invasive procedures. However, it is likely in such a
case that there would soon be a decision to make about gonadectomy to prevent
cancer. Most 15-year-olds are quite capable of understanding and participating
in a decision like this. Therefore, respect for her dignity and autonomy
requires that she be told the truth about her condition and allowed to
participate in decisions to the extent of her capacity. (Of course, even if
there are no immediate decisions to make, respect for the patient requires that
she be told the truth about her diagnosis in an appropriate way.)
Finally, the AAP policy states that there are times when the pediatric
patient’s decision about medical care is ethically and even legally
binding. The most obvious example here is in the case of deciding whether to
participate in research, especially where there is no prospect of direct
benefit to the patient. As momentum builds for more research into the outcomes
of DSD treatment, it is important to keep this rule in mind. If the research
will not benefit the patient directly, then her assent is necessary. In some
other nonurgent situations, such as surgical repair of a malformed ear in a
12-year-old, the AAP policy strongly urges physicians not to proceed without
assent. Generally, the older the patient and the less urgent the procedure, the
more strongly the policy advises obtaining assent. These guidelines should be
kept in mind for patients with DSD in all treatment decisions.
The AAP also recognizes that in some cases, adolescents do have full
decision-making capacity and sometimes legal authority. In such cases,
providers should obtain informed consent from the patient herself. For example,
the policy states that obtaining the patient’s informed consent is
encouraged for performance of a pelvic exam in a 16-year-old. It seems obvious
that providers should similarly obtain informed consent for genital exams in
older teens with DSD.
Navigating the informed consent process has been one of the biggest
problem areas in the history of DSD treatment. As providers develop improved,
patient-centered models of care, the AAP’s model policy for consent in
pediatric cases offers invaluable guidance. I urge all providers to read it.
Anne Tamar-Mattis, JD, is an Executive Director of Advocates for
Informed Choice, Cotati, Calif. She welcomes responses to this article at
director@aiclegal.org.
For more information:
- American Academy of Pediatrics, Committee on Bioethics.
Pediatrics. 1995;95:2:314-317.
- Karkazis K. Fixing Sex: Intersex, Medical Authority, and
Lived Experience. Durham, N.C.: Duke University Press; 2008.
