Post a description of the cultural factors that you  might consider in providing service to the individual and family  described in the case. Explain the course of action a medical social  worker should take to address the cultural issues illustrated in the  case. Be sure to support your statement by referring to the National  Association of Social Workers standards or recommendations. Explain two  cultural factors that might challenge you when working with a patient  and his or her family who belong to a different culture than yours.  Explain measures you might consider to enhance your cultural competence
Culture Clash Involving Intersex
Parents from a Middle Eastern country bring their thirteen-yearold son to the hospital seeking treatment for a minor abnormality of the penis (hypospadias) and for breast
development. The child has had two episodes of bleeding through the penis.
The physician determines that the boy had a 46XX karyotype, both a uterus and ovaries, and severe congenital adrenal hyperplasia, which caused the
child to vidlize in utero. The bleeding was actually menstruation.
The physician tells the parents that a hysterectomy and an oophorectomy are necessary to prevent further bleeding.
Also, one of the child’s kidneys is not functioning and needs to be removed.
The parents ask the pédiatrie urologist to perform hypospadias surgery, a bilateral mastectomy, hysterectomy, oopherectomy, and nephrectomy. Further,
they want them performed all at one by David Diamond
The dilemma confronting the treating physicians is remarkably difficult under ordinary circumstances. In
this situation it is further complicated by cultural differences.
The thirteen-year-old, pubertal padent is a chromosomal and gonadal female with a male appearance and male gender role. Following a thorough evaluation of his situation, it is apparent that his problems are far more complex than originally anticipated. There appear to
12
HASTINGS GENTER REPORT
time (because they cannot remain in the
country very long) and without involving the child in the decisionmaking or
informing him of his medical condidon
or of his potential female reproductive
capacity. The child expresses a desire to
have the mastectomies performed in
order to avoid teasing.
While in the United States 46XX babies with severe masculinization have
traditionally been raised as females in
order to preserve fertility, there has been
a shift to male sex assignment for two
reasons: evidence of early androgen imprinting on behavior and identity and a
desire co minimize the trauma of
surgery on external genitalia. Further,
given that for thirteen years the child
has been reared as a male and that, according to his parents, his behavior has
been characteristic of his society’s male
gender role, he probably could not now
develop a female gender idendty.
The culture favors males, and the
parents assert that they would have difficulty accepting their child if his gender
were reassigned. They also indicate that
in their society, if he turns out to be homosexual, someone would probably kiü
him. The physician tells the parents that
the child may or may not, regardless of
gender idendty, develop a homosexual
orientation, but that the child is too
young to have a reliable opinion of his
sexual orientation, especially given his
ignorance of his medical condition and
his culture’s views about homosexuality.
The urologist consults with a psychologist knowledgeable about inrersex,
and both feel uncomfortable about
doing the surgeries without the child’s
consent. The parents insist that the decision is the father’s and that the father
knows what is best for the child. Should
the urologist comply with their wishes?
be three management options for this
boy. The first is to maintain (and enhance) his male appearance by repairing
the penile abnormality, performing bilateral mastectomy, and removing all
discordant female reproductive organs.
Given the patient’s age, exogenous male
hormones should be started to enhance
secondary sexual characteristics. This
course of treatment would most closely
approximate what the family had in all
likelihood anticipated before the diagnosis of congenital adrenal hyperplasia
with a 46XX karyotype. The second option is to assign the patient to a female
gender role, convert the external genitalia to a female phenotype, and main-
tain the female reproductive organs.
This approach would preserve the patient’s fertility, whereas the first would
certainly sacrifice it. A third option is to
acknowledge that the patient’s situation
has turned out to be far more complex
than anticipated and for the parents to
defer treatment until the child can make
the decision personally on the preferred
management.
The father, assuming the responsibility of decisionmaker, has selected the
first option. In so doing, he has preserved the child’s gender role, thereby
preserving his established status within
the family and within his community.
The father thereby rejects the considerJuly-August 2003
able uncertainty of a gender reassignment, with its attendant risks for his
child’s role within the family and community. While we can appreciate such a
risk in our own culture, the extent of
the risk for this boy within his own culture is impossible for us to comprehend.
One might argue that the father’s decision is supported by a “family-centered model” of autonomous decisionmaking. In this context, a higher priority is placed on harmonious functioning
of the family than on autonomy of its
individual members. One could imagine that a son’s gender reassignment to
female might well make it impossible
for the family to return to its original
community, making the price of such a
decision for the family prohibitive.
By Sharon Sytsma
T
he doctors in this case face a heartrending quandary, caught as they
are in a culture clash that places their patient in a precarious situation. Acceding
to the parents’ wishes places the child at
greater risk from the multiple surgeries
performed, fails to respect the child’s autonomy, irreversibly deprives the child
of all procreative capacity, and puts the
child at significant psychological risk.
On the other hand, not performing the
surgery means the child will continue to
be taunted and suffer almost certain
disenfranchisement and rejection, and
that he quite possibly will be murdered.
Balancing the advantages against the
disadvantages of performing the surgeries would seem to indicate that the
physicians should agree to the parents’
requests. We now know that those who
have been assigned to a certain gender
because of intersex conditions usually do
not express a desire to change their gender as they mature. Because the child
has maintained a firm male identity
throughout his childhood and seems to
enjoy participating in male pattern behavior, he is even less likely to assume a
female gender identity and to resent the
loss of his female reproductive capacity.
July-August 2003
On the other hand, the son’s autonomy is sacrificed by the father’s approach.
He has been denied an explanation of
his diagnosis and a discussion of the alternatives. The extent to which the father’s approach is culturally driven is
difficult to ascertain. In a previous era,
such a secretive and paternalistic approach to intersex disorders was commonplace in this country, and it was
justified on the basis of beneficence.
However, long-term feedback from
many patients has demonstrated that
the veil of secrecy heightened anxiety
and undermined the physician-patient
relationship. Such practices would be
regarded as improper today in the context of enlightened American medicine.
So what is the proper posture of the
treating urologist? Given the significant
cultural divide, the parents’ own value
system must be the guide. Such an approach would seem to combine the
family-centered model of autonomous
decisionmaking with a patient’s best interest standard of surrogate decisionmaking by the father. As a result, a determination would be made of the net
benefits among available options, incorporating quality-of-life criteria for the
patient and the family. The urologist
must believe that the selected treatment
will benefit the child and justify the associated surgical and anesthetic risks.
Without such conviction, surgical treatment by the practitioner would be inappropriate.
Given the cultural bias toward males,
the parental attitudes, and the apparently consistent male gender identity and
behavior, the child would probably
choose not only the mastectomies and
kidney removal, but the other surgeries
and treatment as well. Changing the boy
is certainly more within our power than
changing his culture, and the surgeries
will make it easier for him to thrive in
that culture.
However, we have learned that withholding information about intersex
from children is more likely to be damaging than not. Children who are kept
in the dark are made to feel freakish,
alone, and fearful that they must be
dying. They think of their parents as coconspirators with the doctors, causing a
deep feeling of alienation. Children’s
trust in their parents and in the medical
profession is thus ofien irretrievably lost.
The experience of not being unconditionally loved causes lifelong psychological difficulties. Allowing the child to
make the decisions to accept the greater
risk of the combined surgeries is more
respectful of the child’s intrinsic worth;
and should the child actually come to
identify as female and regret the decision, at least he would not experience resentment toward his parents and the
doctors. Nevertheless, this child has not
been prepared for learning the truth
about his condition and could very well
be traumatized by it, and trauma increases the risks of any surgery. Because
he must leave the country soon, he
would not be able to receive sufficient
counseling to enable him to recover psychologically.
Insisdng that the child participate in
the decision might seem to fail to recognize the right of parental autonomy and
to display a lack of respect for the values
of another culture. The concern is compelling, but problematic. Surely, not all
cultural values are worthy of respect. We
should not be morally required to set
aside our own moral judgments, especially when they are backed by experience, scientific study, and ethical principles. TVllowing the values of other cultures to override our own would be appropriate only when those values are
morally or epistemically on par or superior to our own. In other cases, doing so
would be a matter of moral abdication.
A duty to respect the values of another
culture cannot consist in simply deferring to those values, hut only the duty to
try to understand why a culture values
what it values, to withhold wholesale
condemnation of individuals belonging
to that culture for holding such values,
to be open-minded to the possibility
that the values of another culture may
be either equally tenable or morally superior to our own, and to refrain from
imposing our own values on a culture
HASTINGS CENTER REPORT
13
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