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She carries within her body another human being and
faces the consideration of her fetus as a second patient
with health interests that entail ethical obligations. 15 In
fetal-maternal medicine, autonomy belongs to the preg-
nant woman, and she makes decisions for herself and
her fetus with few limitations. Ultimately, the decisions
Maria makes in Case 1 prevail for herself and her fetus
unless she is not competent to make decisions. 16,17
Some women who receive a diagnosis of type II OI
decide to terminate the pregnancy for personal or fam-
ily reasons, and perinatal ethics would require that clini-
cians support this decision when the fetus is previable. 18
Clinicians should also respect other reasonable options
for the management of a pregnancy with a potentially
lethal anomaly. Those options include a decision against
further testing of a fetus with a potential to avoid over-
medicalization of the pregnancy and the anxiety that
testing can engender 8 or the choice to continue the preg-
nancy with nonaggressive obstetric management in the
third trimester if there is little or no benefit for the fetus. 19
Additionally, some women use the diagnostic infor-
mation to prepare psychologically and medically for a
difficult outcome and choose to support a pregnancy
diagnosed with OI based upon personal morals. For
example, a pregnant woman may reject termination of
her previable fetus for religious and/or philosophical
reasons, which is the position of the author. 20 Moreover,
some pregnant women value their fetus regardless of a
diagnosis of disability and make choices accordingly to
benefit their fetus even at some increased risk to their
own well-being, and clinicians should support this
decision. 21-24
Ethical questions sometimes arise when the choice
of the pregnant woman differs from that of her clini-
cian. 25 The ethical obligation generated by autonomy is
to respect the decisions of pregnant women even if the
clinician disagrees, provided that the treatment choices
are medically and ethically acceptable. 26,27 This does not
mean that clinicians cannot or should not express their
values or share their expertise and wisdom. It is the
responsibility of the clinician to engage in dialogue (see
discussion below), to familiarize the woman/family with
the range of options going forward in their particular
situation, and also help the woman and her family imag-
ine a future that they are most likely not able to imagine
themselves.
differ. Most families will choose a method of deliv-
ery thoughtfully informed by their own values, family
context, financial considerations and support systems.
Professionals sometimes prefer a plan based solely
on medical indicators or their personal perspectives
and fail to acknowledge the importance of these extra-
medical factors. 28-29
Ethical quandaries arise when clinicians exert not-
so-subtle pressure for treatment decisions aligned with
their own values regarding the mode of delivery. In Case
1 the obstetrician was unwilling to accept the option of
a cesarean section that potentially minimized risk to
the fetus while placing the mother at increased risk. It
is reasonable for an obstetrician to review the poten-
tial risks of a cesarean delivery, including potential
increased harm to the woman and the possible death of
the infant. Nevertheless, if a pregnant woman chooses a
cesarean delivery that entails minimal increased risk to
her, and the outcome for the fetus is possibly beneficial,
the woman's autonomy should be respected, even if the
infant will likely perish. Ample data show that decision-
making about cesarean delivery is routinely influenced
by non-obstetrical factors including patient and/or phy-
sician preferences. 30
It is important to acknowledge that the expertise and
knowledge of clinicians is powerful, especially in a deliv-
ery decision that entails great uncertainty and complex-
ity. There is evidence that medical authority sometimes
trumps the decision-making process in situations com-
parable to Case 1 . 31-32 To counteract the unequal power
situation, it is important for the clinician to be aware of
the potential for undue influence and to listen carefully
to possible countervailing values expressed by a preg-
nant woman who may wish to assume the risks that a
cesarean entails. The ethical obligation of the clinician is
to acknowledge the imbalance of power and guide the
discussion with good information about options.
New mothers may not completely understand all the
benefits and harms of choosing a cesarean delivery, but it
is very important that they make that decision for them-
selves and their infant and include factors aligned with
their own circumstances and values that clinicians may
not understand or acknowledge. 33 This is the essence
of shared decision-making in a situation where it is dif-
ficult to weigh benefits and risks/burdens. 34 Of course,
clinicians have their own perspectives, and their role as
professionals is to make their experience and expertise
available to inform the discussion.
Mode of Delivery
In the third trimester when the fetus diagnosed with
a lethal anomaly will potentially be born alive, a preg-
nant woman's decisions shift to alternative modes of
delivery. At this juncture once more, the ethical obliga-
tion of clinicians is to support the reasonable decision of
a pregnant woman, even if the goals of the professionals
Perinatal Care
Discussions regarding care of a neonate diagnosed
in utero with severe OI are fraught with great uncer-
tainty about the prognosis, introducing additional anxi-
ety into an already difficult situation. Decision-making
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