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Fetus with a Lethal Condition

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In 1974, Shirley Berman was a 38-year old pregnant patient under the ... be one for which survival for more than a brief period after birth is impossible ... – PowerPoint PPT presentation

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Title: Fetus with a Lethal Condition


1
Fetus with a Lethal Condition
  • Ma. Teresa C. Ambat, MD
  • PL 3 Pediatric Resident

2
Infant Mortality Rate
3
Ethical Basis of Screening for Fetal Anomalies
  • Why offer screening for fetal anomalies?
  • Legal considerations
  • Ethical considerations

4
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.

5
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

6
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
    ones pregnancy

7
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

8
Ethical 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

9
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

10
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

11
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

12
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

13
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

14
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

15
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

16
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

17
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

18
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

19
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 mothers
    interests
  • This non-aggressive approach avoids procedures
    that increase maternal risks such as tocolysis
    and C-section for fetal indications

20
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 fetuss
    interests
  • This aggressive approach uses medical and
    surgical procedures considered necessary to
    promote fetal well-being even though they involve
    increase maternal risks

21
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

22
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

23
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

24
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

25
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
  • Physicians opposition to abortion would be
    grounds for withdrawing from a case and
    transferring the patient care to another physician

26
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

27
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
    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

28
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

29
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

30
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

31
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

32
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)

33
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

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

37
Perinatal Hospice
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