Title: Fetus with a Lethal Condition
1Fetus with a Lethal Condition
- Ma. Teresa C. Ambat, MD
- PL 3 Pediatric Resident
2Infant Mortality Rate
3Ethical Basis of Screening for Fetal Anomalies
- Why offer screening for fetal anomalies?
- Legal considerations
- Ethical considerations
4Ethical 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.
5Ethical 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
6Ethical 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
ones pregnancy
7Ethical 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
8Ethical Basis of Screening for Fetal Anomalies
- Principle of beneficence
- Physicians should strive to promote the
well-being of patients by removing and preventing
harms - Raising children with anomalies can create
special burdens, that for some families
substantially reduce the familys quality of
life
9Ethical 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
10Providing 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
11Giving 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
12Giving 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
13Giving 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
14Giving 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
15Giving 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
16Giving 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
17Giving 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
18Options 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
19Options 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 mothers
interests - This non-aggressive approach avoids procedures
that increase maternal risks such as tocolysis
and C-section for fetal indications
20Options 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 fetuss
interests - This aggressive approach uses medical and
surgical procedures considered necessary to
promote fetal well-being even though they involve
increase maternal risks
21Options 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
22Previability 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
23Previability 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
24Previability 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
25Previability 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 - Physicians opposition to abortion would be
grounds for withdrawing from a case and
transferring the patient care to another physician
26Legal 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
27Legal 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
anomalies-normal fetuses (range of 22-24 weeks) - Life-threatening anomalies are there any
anomalies for which abortion gt24 wks is legal
because fetuses having those anomalies are
justifiably considered legally non-viable? - ? Anencephaly
- ? Trisomy 13, 18
28Legal 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
29Post-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
30Post-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
31Post-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 -
32Post-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)
33Post-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
34 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
35 Perinatal Hospice
- After prenatal diagnosis of a lethal condition,
parents are presented with option of a
multi-disciplinary 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
36 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 babys 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
37Perinatal Hospice
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40Thank You and Good Afternoon