Fetus with a
Lethal Condition
Ma. Teresa C. Ambat, MD
PL 3 Pediatric Resident
Infant Mortality Rate
Ethical Basis of Screening for Fetal Anomalies
• Why offer screening for fetal anomalies?
– Legal considerations
– Ethical considerations
Ethical Basis of Screening for Fetal Anomalies
• In 1974, Shirley Berman was a 38-year old pregnant
patient under the care of two OBs in NJ. The
pregnancy culminated with the delivery of a child with
Down Syndrome.
• Mrs Berman claimed that her physicians had not
informed her that her age put her at increased risk for
having a child with DS or that amniocentesis was
available for determining whether the fetus had this
condition.
Ethical Basis of Screening for Fetal Anomalies
• Failure to provide the information in question resulted
in Mrs Berman being deprived of the opportunity to
make decision about whether to terminate the
pregnancy.
– “defendants directly deprived her – and, derivatively,
her husband of the option to accept or reject a parental
relationship with the child”
– “caused them to experience mental and emotional
anguish upon their realization that they had given birth
to a child afflicted with Down syndrome”
Ethical Basis of Screening for Fetal Anomalies
• Ethical duty to provide information about
screening is based in part on respect for the
autonomy of pregnant women and their partners
– Reproductive freedom:
• freedom to procreate
• freedom not to procreate
– freedom not to gestate, freedom to
terminate one’s pregnancy
Ethical Basis of Screening for Fetal Anomalies
• The autonomy of pregnant women and their
partners is promoted when they are provided
information relevant to decisions about whether to
continue a current gestation
– Facts about health status of the fetus, the presence
or absence of anomalies and the implications of
anomalies for the child and the family
Ethical Basis of Screening for Fetal Anomalies
• Principle of beneficence
– Physicians should strive to promote the wellbeing of patients by removing and preventing
harms
• “Raising children with anomalies can create
special burdens, that for some families
substantially reduce the family’s quality of life”
Ethical Basis of Screening for Fetal Anomalies
• In providing information about screening, physicians
not only promote autonomy but also give the
pregnant woman and her partner the opportunity to
make their decisions about what would best
promote the well-being of their family
Providing Emotional Support
• Physicians have a duty to provide emotional
support
– Principle of beneficence: prevent and remove
health-related harms to their patients
– Pregnant patients who are experiencing emotional
distress related to fetal anomalies have a need for
help in reducing and preventing such distress
– The physician is in a position to offer such help
Giving Bad News
• When testing reveals that fetus has an
anomaly
– The physician has the duty not only to give
information but also do so in a manner that
provides emotional support
– The ability to communicate well and with
compassion
– Many physicians receive little or no training in
giving bad news and feel uncomfortable doing so
Giving Bad News
• Effective ways to deliver bad news
– A meeting is scheduled in advance for the purpose
of discussing test results
– In other situations, results are communicated to the
patient immediately after a test
• In either situation, the patient should be offered the
opportunity to bring her partner or another significant
person with her
Giving Bad News
• The physical setting should be a place that is
conducive to having a discussion - architecturally
private and relatively quiet place
• Set aside sufficient time for the meeting to permit
information to be given, to answer questions and to
respond to emotional reactions
• Discussion: information about the test results, the
nature of the fetus’ medical problem and prognosis
Giving Bad News
• Clarity in conveying information is important
– Use terms that patient can understand
– Avoid too much medical details
– Proceed at a pace that is conducive to patient
comprehension
– How much to tell at one time varies
– Patients and partners should be encouraged to ask
questions
Giving Bad News
• Communicate concern and support
– Physician should sit at the same level as the patient,
as opposed to standing over them
– Eye contact, facial expressions and body language
are important and can be used to communicate a
caring attitude
– Physicians should show their feelings
– Should reassure the patient that good care will
continue and that her medical needs will be met
Giving Bad News
• Communicate concern and support
– It is acceptable to show concern by touching the
patient such as holding or gripping hands
– If the patient cries, expressions of sympathy followed
by a period of silence might be appropriate
– Giving bad news face to face is preferable to giving it
over the telephone
Giving Bad News
• Follow-up meetings
– Should be scheduled in the near future to review
the situation
– Discuss options for pregnancy management
– Address the patients’ emotional needs
Options for Management of Fetal Anomalies
• Abortion
– Legally available in all states before viability
– Access to abortion is limited
• Lack of provider of abortion services
• After viability, the availability is even more restricted
– Each state has different regulations re: abortion
• In Texas, abortion is legal after viability when the
fetus has severe anomalies
Options for Management of Fetal Anomalies
• Continue the pregnancy with management
aimed at optimizing the well-being of the mother
– Conflicts between maternal and fetal well-being are
resolved by giving priority to the mother’s interests
– This non-aggressive approach avoids procedures that
increase maternal risks such as tocolysis and Csection for fetal indications
Options for Management of Fetal Anomalies
• Continue the pregnancy with management aimed
at optimizing the well-being of the fetus
– Conflicts between maternal and fetal well-being are
resolved by giving priority to the fetus’s interests
– This aggressive approach uses medical and surgical
procedures considered necessary to promote fetal
well-being even though they involve increase
maternal risks
Options for management of fetal anomalies
• Continue the pregnancy using an
intermediate strategy that balances fetal and
maternal interests
– This balancing approach permits the mother to be
exposed to risks for the sake of the fetus in some
but not all situations
Previability Counseling and Decision-making
• Before viability, there is usually no invasive
therapeutic interventions that can be carried out
for the sake of the fetus
• Exception involves a small number of cases in
which fetal therapy might be possible
• Before viability, the main options are: terminate
pregnancy, continue the pregnancy and continue
the pregnancy with fetal therapy
Previability Counseling and Decision-making
• Experimental fetal therapy
– All surgical therapy is considered experimental, and it
is available only for a small number of fetal
malformations and only at a few research centers
– There is no duty to mention a procedure that is
experimental and whose safety and effectiveness
is uncertain
– Ethically permissible to mention such procedures
provided they are being carried out in a manner
that meets rigorous ethical standards including IRB
approval
Previability Counseling and Decision-making
• Abortion
– Decision about abortion is usually based on
values and often on religious beliefs
– Moral controversy and politicization of
viewpoints can further increase the emotional
distress to the woman
– Various things can be done by the OB to
provide emotional support
Previability Counseling and Decision-making
• Abortion
– Present the abortion option in a non-directive
manner
– Directive counseling in the form of termination of
pregnancy when continuing pregnancy involves
serious risk to the life and health of the woman
– Physician’s opposition to abortion would be
grounds for withdrawing from a case and
transferring the patient care to another physician
Legal Definition of Viability
• ? Fetal viability
– “the time when viability is achieved may vary with
each pregnancy”
– “the determination of whether a particular fetus is
viable, is and must be a matter for the judgment
of the responsible attending physician”
– “viability is reached when, in the judgment of the
attending physician, there is a reasonable
likelihood of the fetus sustained survival outside
the womb, with or without artificial support”
Legal Definition of Viability
• Life-threatening vs Non-life-threatening anomalies
– Non-life-threatening anomalies: the determination of
viability is the same as for fetuses that lack anomaliesnormal fetuses (range of 22-24 weeks)
– Life-threatening anomalies: are there any anomalies
for which abortion >24 wks is legal because fetuses
having those anomalies are justifiably considered
legally non-viable?
• ? Anencephaly
• ? Trisomy 13, 18
Legal Definition of Viability
• Relatively little legal risk for the physician
– The anomaly has to be one for which survival for more
than a brief period after birth is impossible
– …can be diagnosed with high degree of reliability
• Abortion for serious fetal anomalies after 24 wks is a
legal option only infrequently
– except in the few states that allow abortions after
viability for reasons other than maternal life and health
Post-viability Counseling and Decision-making
• When pregnancy is carried beyond the point of
viability, decisions need to be made re:
management up to and during delivery
– Aggressive vs non-aggressive approach
– Recommendation for one over the other
depends on the severity of the anomaly
Post-viability Counseling and Decision-making
• Aggressive management
– Intervention would provide more than
minimal benefit for the fetus
1. Promote fetal well-being, based on principle
of beneficence
2. If the fetus has an anomaly that is less
serious
Post-viability Counseling and Decision-making
• Non-aggressive management
– Intervention would expose the mother to risks
and would provide minimal or no benefit for the
fetus
– Fetal anomaly that is detectable with high
degree of reliability and characterized by any 1
of the ffg:
Post-viability Counseling and Decision-making
• Non-aggressive management
1. Incompatibility with survival for an extended
period (Triploidy)
2. Absence of potential for sentience as
(anencephaly)
3. Severely diminished cognitive potential
(Trisomy 13 or 18 etc…)
Post-viability Counseling and Decision-making
• Gray zone
– No strong argument to recommend 1 of 2
approaches over the other
1. If the diagnosis is relatively reliable but
there is uncertainty as to whether there will be
a severely diminished cognitive potential
2. If the diagnosis carries a poor prognosis but
there is uncertainty concerning the diagnosis
Perinatal Hospice
• Management using hospice principles
– Comprehensive support from the time of
diagnosis through the birth and death of the infant
and up to 1 year postpartum
– Addresses the emotional, spiritual and medical
needs of the family
– Interdisciplinary team – maternal-fetal medicine,
neonatology and anesthesia services, nurses,
social worker, chaplain etc
Perinatal Hospice
• After prenatal diagnosis of a lethal condition,
parents are presented with option of a multidisciplinary program of ongoing supportive care
• Family status and care plan are reviewed at
regularly scheduled perinatal planning
conferences
• Extensive support is also provided during labor
and delivery
Perinatal Hospice
• At birth, the attending neonatologist evaluates the
infant, confirms the diagnosis and places the infant
with the parents so they can share in their baby’s
life and death
• Comfort measures are given: infants are kept
warm, cuddled, fed, given pain medications
• Chaplain and social worker services provide
emotional and spiritual support
• Care is continued in the post-partum period by
those providing grief support
Perinatal Hospice
Where
The Program
Comment
Monroe Carell Jr Offers symptom Mx, New NICU has private
Children’s Hospital support for families in rooms with rocking
the NICU, PICU &
chairs & soft lighting
at Vanderbilt
Pedi wards
Nashville
San Diego Hospice “Early Intervention”
& Palliative Care program cares for
pregnant women with
San Diego, Ca
fetuses dx with fatal
anomalies
Families create a birth
plan: medical care the
baby should receive
(resuscitation, tube
feedings)
Where
The Program
Comment
Medical College of
Wisconsin
Milwaukee
“Fetal Concerns”
program for pregnant
women & their
families
Palliative care nurses
are present during
delivery. MoSO4 is
kept by the bedside
for immediate pain
relief
Hospice & Palliative “Kids Path” program
Care of Greensboro helps parents of
terminally ill infants
Greensboro, NC
care for babies &
enable them to die at
Also works with
pregnant women.
Runs support groups
for siblings.
home
Where
The Program
Comment
Children’s Hospital
of Philadelphia
Philadelphia, PA
Palliative care
program available to
children in the NICU
& other pediatric units
Uses drugs: MoSO4 &
ativan to treat critically
ill babies. Works with
parents to let baby die
at home.
Thank You and
Good Afternoon