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 one’s 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 family’s 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 mother’s 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 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

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 • Physician’s 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 >24 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 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

37. Perinatal Hospice

40. Thank You and Good Afternoon