Fetus with a Lethal Condition

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Fetus with a Lethal Condition

• Ma. Teresa C. Ambat, MD
• PL 3 Pediatric Resident

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Infant Mortality Rate
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Ethical Basis of Screening for Fetal Anomalies

• Why offer screening for fetal anomalies?
• Legal considerations
• Ethical considerations

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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.

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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)

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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

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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

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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

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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

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Perinatal Hospice
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Thank You and Good Afternoon