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Ethical considerations of fetal urology: summary of the Twenty-Second Biannual Meeting of the Society for Fetal Urology
SOCIETY FOR FETAL UROLOGY UPDATE
ETHICAL CONSIDERATIONS OF FETAL UROLOGY: SUMMARY OF THE TWENTY-SECOND BIANNUAL MEETING OF THE SOCIETY FOR FETAL UROLOGY TIMOTHY P. BUKOWSKI
T
he fundamental driving force in life is to do the right thing. Those who teach children or raise their own children know that children thrive on being told the right way to behave and how to excel in life. They become frustrated and lose attention if not given specific, logical instruction. Physicians, especially surgeons, know that when faced with uncertainty or incomplete information, we use principles of physiology, anatomy, biochemistry, and past experience to find a solution to a problem. But what about the case where there is little experience to guide us? How do we choose a path to follow, especially, in the words of Professor Clare Fe´ke´te´, when there is only a “least worst” choice? What about our initial decision to act? What principles do we follow to guide patient care when faced with an uncertain outcome? Finally, who decides what constitutes the best outcome? Probably the most dramatic example we face as urologists is a woman carrying a fetus with bilateral hydronephrosis and megacystis and oligohydramnios. When facing that pregnant couple in the consultation room, what is our responsibility as physician to the fetal patient, to the family, to society? Is there is a decision tree to use? How do we guide ourselves and those involved through this decision tree? How do we start to prioritize our decisions? These were the questions posed before a panel of experts at the 22nd biannual meeting of the Society for Fetal Urology, in Dallas, Texas, who discussed the topic of ethics, with particular regard to fetal anomalies. Present were Bill Cromie, Professor of Surgery/Pediatrics at the University of Chicago, This paper was presented at the Society for Fetal Urology Conference in Dallas, Texas, May 1999. From the Division of Pediatric Urology, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina Reprint requests: Timothy P. Bukowski, M.D., Division of Urology, University of North Carolina School of Medicine, 427 Burnett-Womack Building, Campus Box 7235, Chapel Hill, NC 27599-7235 Submitted: July 2, 1999, accepted (with revisions): August 2, 1999 © 1999, ELSEVIER SCIENCE INC. ALL RIGHTS RESERVED
Clare Fe´ke´te´, Professor of Pediatric Surgery at Necker-Enfants Malades in Paris, and Roy Martin, D.Min., Chaplain Emeritus, Cook Children’s Medical Center in Fort Worth, Texas. Presentations and discussions centered around practical dilemmas, and most present came to a better understanding of the problems and questions we face in the practice of fetal urology. First, we reviewed a very brief outline of how normative ethics might help to describe solutions. This was based on a number of sources and represents a conceptual line of reasoning concerning fetal ethics. Further ethical understanding and examination is needed to provide physicians with a paradigm for counseling and is beyond the scope of this paper.1 Physicians are familiar with the Hippocratic oath. The core of the oath is, of course, to do what is good for our patients, at least without harm. The ethics of the Hippocratic corpus were written over a period of time by various Greek schools of philosophy and contain obligations of beneficence, nonmaleficence, and confidentiality, as well as some prohibitions against abortion, euthanasia, surgery, and sexual relationships with patients. Throughout the years, these codes were modified with cultural, religious, and theological overtones in the Judeo-Christian society until Perceval attempted to solidify this into a written code in Britain in 1803. In 1847, the American Medical Association released its first written code of ethics. It was based on the Hippocratic method but also included information on etiquette for physicians such as proper dress, gossip, reputation, cleanliness, truth-telling, consultation with other physicians, and the physician’s education. With the 1960s came societal re-examination of traditions, including these Hippocratic principles. This came about because of a better-educated public and the spread of participatory democracy such as civil rights, feminism, and consumer action. The need to re-examine medical ethics also came about UROLOGY 54: 1093–96, 1999 • 0090-4295/99/$20.00 PII S0090-4295(99)00357-X 1093
because of the leaps and bounds made in medical technology.2 Moral philosophers began to speak and write on medical ethical values. A benefit of this was to leave out any religious overtone that had integrated itself into the previous Hippocratic system of the American Medical Association’s bioethics. Beauchamps and Childress,3 in 1979, published a book titled Principles of Biomedical Ethics from which they espoused four principles especially appropriate to medical ethics: beneficence, nonmaleficence, autonomy, and justice. The first two, beneficence and nonmaleficence, were synonymous with the Hippocratic obligations; that is, to act in the best interest of the patient, minimizing harm. The principle of autonomy, however, was a new direction, as it contradicted the previous traditional paternalism of the Hippocratic ethic that gave no place for patient participation in clinical decisions. Autonomy has become important in the idea of informed consent and emphasizes self-determination. The principle of justice is the most remote from traditional medical ethics, as it brings the question of how to equitably distribute health care. This principle links the physician with society, as physicians become agents primarily of fiscal or social purposes rather than primarily of the patient. Our discussion revolved around current practices in the United States and France with regard to fetal urologic anomalies—the way things are done, not particularly the way they should be.1 In particular, we discussed the fetus with obstructive uropathy. In this report, I outline how some of the pertinent issues were addressed, and how one can use the principles outlined above to better understand an ethical approach to the condition. Normally, fetal kidneys can be visualized by ultrasound and are “working” at week 14, so that by week 18, almost all amniotic fluid is due to fetal urine production. But nephrogenesis is not complete until week 36, and the maximum glomerular filtration rate is not reached until 1 to 2 years after birth. Prenatal hydronephrosis can occur anywhere in fetal development, with predictably worse consequences the earlier it is seen. Fetuses with bilateral hydronephrosis, megacystis, and poor amniotic fluid development have a high postnatal mortality rate. Certain parameters have been described for the worst case scenarios, but exacting parameters with those expected to have good renal function are less specific.4 In general, these prognosticators have been useful in helping parents decide a treatment plan for their fetus if the hydronephrosis is found before 24 weeks’ gestation. In the United States, elective termination of pregnancy before 24 weeks’ gestation is legal. In some patients, however, function has been seen to deteriorate as the 1094
pregnancy progresses. This may be particularly troublesome for parents in the United States, as most states prohibit elective termination of a pregnancy after 24 weeks’ gestation (or time of viability), unless the mother’s life is at risk (Roe versus Wade, 1973, U.S. Supreme Court). These laws are based on the premise that a fetus is nonviable before a time around 24 weeks’ gestation and viable after that time (with the assistance of technology), and thus, the mother has a right to choose whether to continue a pregnancy. Ethically, this approach to the fetus can be supported by Chervenak et al.,1 who argue that before this period, the fetus is previable, and therefore is dependent on the mother to decide whether to proceed with the pregnancy. Using the principle of autonomy, it should be assumed her decision will be based on her own set of beliefs and values. The fetus at this point is not considered a patient, and therefore the principle of beneficence does not apply— until the mother decides to proceed with the pregnancy with the expectation it will reach childhood, a period at which it attains independent moral status. After the period of viability occurs, then one must consider the best interests of the fetus, as it is expected to reach childhood. However, if the fetus has an anomaly that will alter viability, such as anencephaly or trisomy 13, even “late” termination of the pregnancy may be considered, as that fetus will not be expected to reach independent moral status.5 Scientifically, on the basis of the fetal sheep model, it has been thought that one would need to intervene before 16 weeks to prevent renal dysplasia and before 24 to 26 weeks to allow normal pulmonary alveolar development. Although clinical data do not yet support limitation of renal dysplasia with intervention, they do support prevention of pulmonary hypoplasia, if intervention occurs early enough.4 Again, intervention with urinary diversion or placement of a vesicoamniotic shunt is still considered experimental but can be justified if the mother elects to proceed, and it is part of an experimental program. Thus, if the fetus is previable (ie, less than 24 weeks’ gestation), the mother has the autonomy to decide whether to proceed with the pregnancy and, in addition, whether to proceed with experimental therapy. In this instance, the physician’s counseling should be nondirected. That is, it should describe the outcomes as best we know in an unbiased fashion and, again, allow the mother to make a decision. Recently, the American Academy of Pediatrics Task Force on Ethics published guidelines on fetal therapy.6 They recommend that women be given the opportunity to counsel with a panel of specialists in a fetal treatment program “with established policies on communication, diagnostic and UROLOGY 54 (6), 1999
therapeutic interventions, and quality improvement.”6 This is to ensure that the mother (or parents) understands the range of possible outcomes from cure to death and the long-term ramifications of what “cure” really entails. Because we have no clear diagnostic test to determine what level of severity a fetus with obstructive uropathy has and therefore cannot precisely prognosticate what the outcome will be, treatment should still be considered experimental. Because early severe oligohydramnios is associated with high mortality (greater than 80%), there is little doubt it is considered a severe anomaly. However, what about the situation in which progressive oligohydramnios occurs later than 24 to 28 weeks? Should this fetus be considered “viable” or “nonviable”? Is this considered a “severe” condition? The level of severity in this situation is subjective; ultimately, one depends on the physician’s best judgment to decide whether the anomaly is severe. Bill Cromie presented some interesting data regarding the decreased incidence of congenital deformities since 1975, 2 years after elective termination of pregnancy was legalized in the United States. Overall, there has been a 20% decrease in the malformation rate, with larger decreases (38%) in urologic diseases, such as exstrophy, posterior urethral valves, and prune belly syndrome. The incidence of spina bifida has decreased by 59%, which may be due to increased usage of folic acid in preventing the neural tube defect or due to the increased fetal termination rate.7 Since the average rate of compliance with taking a folate supplement is low (less than 30%), one might surmise that the decrease is mostly due to elective termination. These data are impressive because less than 17% of anomalies are detected by ultrasound in the first trimester and only 35% before delivery.8 Of course, the presence of high levels of alpha-fetoprotein has been very useful in detecting neural tube defects in the first trimester and thus, possibly resulting in a larger decrease in the spina bifida rate than other urologic anomalies. The unanswered question is whether there is a misconception of the perception of these diseases, at least as presented to pregnant women. This may be supported by a study by Drake et al.,9 who through a questionnaire surveyed 1700 people in Europe regarding their attitude toward termination for a range of fetal abnormalities. They found that obstetricians and geneticists were much more likely than lay people to terminate a pregnancy with a known spina bifida malformation. Dr. Fe´ke´te´ presented information from Paris regarding their fetal treatment program. A striking difference from her counterparts in the United States is the ability to legally terminate a pregnancy up to the due date. Of benefit is that legally there is UROLOGY 54 (6), 1999
more time for evaluation of the fetus, and a more clear diagnosis can be made. One can therefore predict prognosis with more accuracy. When one considers that it is difficult to identify anomalies early, it makes sense to delay a decision until more information is available. In particular, she noted, urologic anomalies may be the first sign of a major anatomic syndrome. When a malformation is identified, a systematic search for other malformations is begun, and fetal karyotyping is performed. This avoids an abortion with “malefice of doubt.” In reviewing her experience, she noted that of 158 patients, 37 had associated anomalies, including 7 with karyotypic anomalies. Three had microcolon-megacystis syndrome, fatal within the first 6 months of life. Vesicoamniotic shunting and amnioinfusion is performed for late oligohydramnios, partly in an attempt to prevent deterioration of bladder muscle. Consideration would be given for preterm delivery for acute obstruction for pelviureteric junction obstruction. In addition, if a termination is performed for medical reasons, autopsy is mandatory. This ensures outcome data are available to improve the diagnostic ability in the prenatal examination. As stated earlier, third-term abortion for a lethal anomaly may be ethically acceptable. What about the fetus without prenatal care or the fetus whose lethal condition is not discovered until birth? If one accepts that it is justifiable to terminate a pregnancy in the third term because the fetus has a lethal anomaly, is it not also acceptable to terminate the infant found at birth to have a lethal anomaly? In addition, might one then proceed down the slippery slope and consider patients with a “severe” anomaly to have a lethal anomaly? Dr. Martin’s discussion centered around a practical approach to addressing ethical dilemmas in the hospital. He stressed the importance of communication and understanding the issues and the parties involved before any decisions are made. An example involved a newborn patient with multiple severe anomalies (cloacal exstrophy) who was transferred to a major medical center for further care. Obviously, this condition is not always lethal, but can be, and it requires intense and lifelong medical and surgical therapy, a major commitment for the family and society. Had there been prenatal care, at 24 weeks the mother might have chosen termination, and, if one accepts this represents a lethal condition, even into the third trimester. However, it is not uniformly fatal, and one could argue it is ethically unjustifiable to have a thirdtrimester termination, let alone infanticide. In this case, family issues and desires were not clearly understood because of language and cultural barriers. The family is Hispanic with a farming background, with a different respect for the life cycle than some 1095
of the physicians and nurses at the receiving hospital. This led to a difference in the therapy that was offered (surgery) and in what the parents desired (that the baby be allowed to die). An approach to resolution requires one to carefully outline the situation medically, legally, and ethically.10 This allows those involved to understand the limitations of their roles and possibilities medically, legally, and ethically. Sometimes going to the courts is the last step in resolution. Ultimately, society can become the ward for the child, if that is in the child’s best interest.11 Most often, even using these tools, a “least worst” decision will be made. Termination of pregnancy for fetal urinary anomalies may be ethically justifiable, but it is not without practical problems. Obvious is the loss of life, and its effect on the family and health care team. It is important that the health care team follow up and support the family, whatever decision is made. Likewise, it is beneficial to have an autopsy to construct outcome data; however, this is not routine in the United States. With termination, there is also the loss of opportunity to improve therapy— both fetal and postnatal—for those who are born with that condition. Again, centers of excellence would allow better evaluation of available data. Finally, is there a loss of self-esteem by those individuals living with these conditions? How can we better support them? Societal support for patients with disabilities has increased during the past 25 years, but it still has many deficiencies.
1096
Understanding and communicating the complexity of these medical and ethical problems is critical if we are to succeed in improving care for the fetus with urologic anomalies. REFERENCES 1. Chervenak FA, McCullough LB, and Kurjak A: An essential clinical ethical concept, in Chervenak FA, and Kurjak A (Eds): The Fetus as a Patient. New York, Parthenon Publishing Group, 1996, pp 1–9. 2. Pelligrino ED: The metamorphosis of medical ethics. JAMA 269: 1158 –1162, 1993. 3. Beauchamps TL, and Childress JF: Principles of Biomedical Ethics. New York, Oxford University Press, 1979. 4. Freedman AL, Bukowski TP, Smith CA, et al: Fetal therapy for obstructive uropathy: diagnosis specific outcomes. J Urol 156(Pt 2):720 –724, 1996. 5. Chervenak FA, McCullough LB, and Campbell S: Is third trimester abortion justified? Br J Obstet Gynecol 102: 434 – 435, 1995. 6. American Academy of Pediatrics: Fetal therapy— ethical considerations. Pediatrics 103: 1061–1063, 1999. 7. Petrini J, Damus K, and Johnston RB Jr: An overview of infant mortality and birth defects in the United States. Teratology 56: 8 –10, 1997. 8. Ewigman BG, Crane JP, Frigoletto FD, et al, for the RADIUS Study Group: Effect of prenatal ultrasound screening on perinatal outcome. N Engl J Med 329: 821– 827, 1993. 9. Drake H, Reid M, and Marteau T: Attitudes towards termination for fetal abnormality: comparisons in three European countries. Clin Genet 49: 134 –140, 1996. 10. Baldwin JM: Ethics in obstetrics and gynaecology: from theory to practice. Br J Obstet Gynecol 102: 501–504, 1995. 11. Simms M: Letter to the editor re: Is third trimester abortion justified? Br J Obstet Gynecol 103: 187–188, 1996.
UROLOGY 54 (6), 1999
ETHICAL CONSIDERATIONS OF FETAL UROLOGY: SUMMARY OF THE TWENTY-SECOND BIANNUAL MEETING OF THE SOCIETY FOR FETAL UROLOGY TIMOTHY P. BUKOWSKI
T
he fundamental driving force in life is to do the right thing. Those who teach children or raise their own children know that children thrive on being told the right way to behave and how to excel in life. They become frustrated and lose attention if not given specific, logical instruction. Physicians, especially surgeons, know that when faced with uncertainty or incomplete information, we use principles of physiology, anatomy, biochemistry, and past experience to find a solution to a problem. But what about the case where there is little experience to guide us? How do we choose a path to follow, especially, in the words of Professor Clare Fe´ke´te´, when there is only a “least worst” choice? What about our initial decision to act? What principles do we follow to guide patient care when faced with an uncertain outcome? Finally, who decides what constitutes the best outcome? Probably the most dramatic example we face as urologists is a woman carrying a fetus with bilateral hydronephrosis and megacystis and oligohydramnios. When facing that pregnant couple in the consultation room, what is our responsibility as physician to the fetal patient, to the family, to society? Is there is a decision tree to use? How do we guide ourselves and those involved through this decision tree? How do we start to prioritize our decisions? These were the questions posed before a panel of experts at the 22nd biannual meeting of the Society for Fetal Urology, in Dallas, Texas, who discussed the topic of ethics, with particular regard to fetal anomalies. Present were Bill Cromie, Professor of Surgery/Pediatrics at the University of Chicago, This paper was presented at the Society for Fetal Urology Conference in Dallas, Texas, May 1999. From the Division of Pediatric Urology, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina Reprint requests: Timothy P. Bukowski, M.D., Division of Urology, University of North Carolina School of Medicine, 427 Burnett-Womack Building, Campus Box 7235, Chapel Hill, NC 27599-7235 Submitted: July 2, 1999, accepted (with revisions): August 2, 1999 © 1999, ELSEVIER SCIENCE INC. ALL RIGHTS RESERVED
Clare Fe´ke´te´, Professor of Pediatric Surgery at Necker-Enfants Malades in Paris, and Roy Martin, D.Min., Chaplain Emeritus, Cook Children’s Medical Center in Fort Worth, Texas. Presentations and discussions centered around practical dilemmas, and most present came to a better understanding of the problems and questions we face in the practice of fetal urology. First, we reviewed a very brief outline of how normative ethics might help to describe solutions. This was based on a number of sources and represents a conceptual line of reasoning concerning fetal ethics. Further ethical understanding and examination is needed to provide physicians with a paradigm for counseling and is beyond the scope of this paper.1 Physicians are familiar with the Hippocratic oath. The core of the oath is, of course, to do what is good for our patients, at least without harm. The ethics of the Hippocratic corpus were written over a period of time by various Greek schools of philosophy and contain obligations of beneficence, nonmaleficence, and confidentiality, as well as some prohibitions against abortion, euthanasia, surgery, and sexual relationships with patients. Throughout the years, these codes were modified with cultural, religious, and theological overtones in the Judeo-Christian society until Perceval attempted to solidify this into a written code in Britain in 1803. In 1847, the American Medical Association released its first written code of ethics. It was based on the Hippocratic method but also included information on etiquette for physicians such as proper dress, gossip, reputation, cleanliness, truth-telling, consultation with other physicians, and the physician’s education. With the 1960s came societal re-examination of traditions, including these Hippocratic principles. This came about because of a better-educated public and the spread of participatory democracy such as civil rights, feminism, and consumer action. The need to re-examine medical ethics also came about UROLOGY 54: 1093–96, 1999 • 0090-4295/99/$20.00 PII S0090-4295(99)00357-X 1093
because of the leaps and bounds made in medical technology.2 Moral philosophers began to speak and write on medical ethical values. A benefit of this was to leave out any religious overtone that had integrated itself into the previous Hippocratic system of the American Medical Association’s bioethics. Beauchamps and Childress,3 in 1979, published a book titled Principles of Biomedical Ethics from which they espoused four principles especially appropriate to medical ethics: beneficence, nonmaleficence, autonomy, and justice. The first two, beneficence and nonmaleficence, were synonymous with the Hippocratic obligations; that is, to act in the best interest of the patient, minimizing harm. The principle of autonomy, however, was a new direction, as it contradicted the previous traditional paternalism of the Hippocratic ethic that gave no place for patient participation in clinical decisions. Autonomy has become important in the idea of informed consent and emphasizes self-determination. The principle of justice is the most remote from traditional medical ethics, as it brings the question of how to equitably distribute health care. This principle links the physician with society, as physicians become agents primarily of fiscal or social purposes rather than primarily of the patient. Our discussion revolved around current practices in the United States and France with regard to fetal urologic anomalies—the way things are done, not particularly the way they should be.1 In particular, we discussed the fetus with obstructive uropathy. In this report, I outline how some of the pertinent issues were addressed, and how one can use the principles outlined above to better understand an ethical approach to the condition. Normally, fetal kidneys can be visualized by ultrasound and are “working” at week 14, so that by week 18, almost all amniotic fluid is due to fetal urine production. But nephrogenesis is not complete until week 36, and the maximum glomerular filtration rate is not reached until 1 to 2 years after birth. Prenatal hydronephrosis can occur anywhere in fetal development, with predictably worse consequences the earlier it is seen. Fetuses with bilateral hydronephrosis, megacystis, and poor amniotic fluid development have a high postnatal mortality rate. Certain parameters have been described for the worst case scenarios, but exacting parameters with those expected to have good renal function are less specific.4 In general, these prognosticators have been useful in helping parents decide a treatment plan for their fetus if the hydronephrosis is found before 24 weeks’ gestation. In the United States, elective termination of pregnancy before 24 weeks’ gestation is legal. In some patients, however, function has been seen to deteriorate as the 1094
pregnancy progresses. This may be particularly troublesome for parents in the United States, as most states prohibit elective termination of a pregnancy after 24 weeks’ gestation (or time of viability), unless the mother’s life is at risk (Roe versus Wade, 1973, U.S. Supreme Court). These laws are based on the premise that a fetus is nonviable before a time around 24 weeks’ gestation and viable after that time (with the assistance of technology), and thus, the mother has a right to choose whether to continue a pregnancy. Ethically, this approach to the fetus can be supported by Chervenak et al.,1 who argue that before this period, the fetus is previable, and therefore is dependent on the mother to decide whether to proceed with the pregnancy. Using the principle of autonomy, it should be assumed her decision will be based on her own set of beliefs and values. The fetus at this point is not considered a patient, and therefore the principle of beneficence does not apply— until the mother decides to proceed with the pregnancy with the expectation it will reach childhood, a period at which it attains independent moral status. After the period of viability occurs, then one must consider the best interests of the fetus, as it is expected to reach childhood. However, if the fetus has an anomaly that will alter viability, such as anencephaly or trisomy 13, even “late” termination of the pregnancy may be considered, as that fetus will not be expected to reach independent moral status.5 Scientifically, on the basis of the fetal sheep model, it has been thought that one would need to intervene before 16 weeks to prevent renal dysplasia and before 24 to 26 weeks to allow normal pulmonary alveolar development. Although clinical data do not yet support limitation of renal dysplasia with intervention, they do support prevention of pulmonary hypoplasia, if intervention occurs early enough.4 Again, intervention with urinary diversion or placement of a vesicoamniotic shunt is still considered experimental but can be justified if the mother elects to proceed, and it is part of an experimental program. Thus, if the fetus is previable (ie, less than 24 weeks’ gestation), the mother has the autonomy to decide whether to proceed with the pregnancy and, in addition, whether to proceed with experimental therapy. In this instance, the physician’s counseling should be nondirected. That is, it should describe the outcomes as best we know in an unbiased fashion and, again, allow the mother to make a decision. Recently, the American Academy of Pediatrics Task Force on Ethics published guidelines on fetal therapy.6 They recommend that women be given the opportunity to counsel with a panel of specialists in a fetal treatment program “with established policies on communication, diagnostic and UROLOGY 54 (6), 1999
therapeutic interventions, and quality improvement.”6 This is to ensure that the mother (or parents) understands the range of possible outcomes from cure to death and the long-term ramifications of what “cure” really entails. Because we have no clear diagnostic test to determine what level of severity a fetus with obstructive uropathy has and therefore cannot precisely prognosticate what the outcome will be, treatment should still be considered experimental. Because early severe oligohydramnios is associated with high mortality (greater than 80%), there is little doubt it is considered a severe anomaly. However, what about the situation in which progressive oligohydramnios occurs later than 24 to 28 weeks? Should this fetus be considered “viable” or “nonviable”? Is this considered a “severe” condition? The level of severity in this situation is subjective; ultimately, one depends on the physician’s best judgment to decide whether the anomaly is severe. Bill Cromie presented some interesting data regarding the decreased incidence of congenital deformities since 1975, 2 years after elective termination of pregnancy was legalized in the United States. Overall, there has been a 20% decrease in the malformation rate, with larger decreases (38%) in urologic diseases, such as exstrophy, posterior urethral valves, and prune belly syndrome. The incidence of spina bifida has decreased by 59%, which may be due to increased usage of folic acid in preventing the neural tube defect or due to the increased fetal termination rate.7 Since the average rate of compliance with taking a folate supplement is low (less than 30%), one might surmise that the decrease is mostly due to elective termination. These data are impressive because less than 17% of anomalies are detected by ultrasound in the first trimester and only 35% before delivery.8 Of course, the presence of high levels of alpha-fetoprotein has been very useful in detecting neural tube defects in the first trimester and thus, possibly resulting in a larger decrease in the spina bifida rate than other urologic anomalies. The unanswered question is whether there is a misconception of the perception of these diseases, at least as presented to pregnant women. This may be supported by a study by Drake et al.,9 who through a questionnaire surveyed 1700 people in Europe regarding their attitude toward termination for a range of fetal abnormalities. They found that obstetricians and geneticists were much more likely than lay people to terminate a pregnancy with a known spina bifida malformation. Dr. Fe´ke´te´ presented information from Paris regarding their fetal treatment program. A striking difference from her counterparts in the United States is the ability to legally terminate a pregnancy up to the due date. Of benefit is that legally there is UROLOGY 54 (6), 1999
more time for evaluation of the fetus, and a more clear diagnosis can be made. One can therefore predict prognosis with more accuracy. When one considers that it is difficult to identify anomalies early, it makes sense to delay a decision until more information is available. In particular, she noted, urologic anomalies may be the first sign of a major anatomic syndrome. When a malformation is identified, a systematic search for other malformations is begun, and fetal karyotyping is performed. This avoids an abortion with “malefice of doubt.” In reviewing her experience, she noted that of 158 patients, 37 had associated anomalies, including 7 with karyotypic anomalies. Three had microcolon-megacystis syndrome, fatal within the first 6 months of life. Vesicoamniotic shunting and amnioinfusion is performed for late oligohydramnios, partly in an attempt to prevent deterioration of bladder muscle. Consideration would be given for preterm delivery for acute obstruction for pelviureteric junction obstruction. In addition, if a termination is performed for medical reasons, autopsy is mandatory. This ensures outcome data are available to improve the diagnostic ability in the prenatal examination. As stated earlier, third-term abortion for a lethal anomaly may be ethically acceptable. What about the fetus without prenatal care or the fetus whose lethal condition is not discovered until birth? If one accepts that it is justifiable to terminate a pregnancy in the third term because the fetus has a lethal anomaly, is it not also acceptable to terminate the infant found at birth to have a lethal anomaly? In addition, might one then proceed down the slippery slope and consider patients with a “severe” anomaly to have a lethal anomaly? Dr. Martin’s discussion centered around a practical approach to addressing ethical dilemmas in the hospital. He stressed the importance of communication and understanding the issues and the parties involved before any decisions are made. An example involved a newborn patient with multiple severe anomalies (cloacal exstrophy) who was transferred to a major medical center for further care. Obviously, this condition is not always lethal, but can be, and it requires intense and lifelong medical and surgical therapy, a major commitment for the family and society. Had there been prenatal care, at 24 weeks the mother might have chosen termination, and, if one accepts this represents a lethal condition, even into the third trimester. However, it is not uniformly fatal, and one could argue it is ethically unjustifiable to have a thirdtrimester termination, let alone infanticide. In this case, family issues and desires were not clearly understood because of language and cultural barriers. The family is Hispanic with a farming background, with a different respect for the life cycle than some 1095
of the physicians and nurses at the receiving hospital. This led to a difference in the therapy that was offered (surgery) and in what the parents desired (that the baby be allowed to die). An approach to resolution requires one to carefully outline the situation medically, legally, and ethically.10 This allows those involved to understand the limitations of their roles and possibilities medically, legally, and ethically. Sometimes going to the courts is the last step in resolution. Ultimately, society can become the ward for the child, if that is in the child’s best interest.11 Most often, even using these tools, a “least worst” decision will be made. Termination of pregnancy for fetal urinary anomalies may be ethically justifiable, but it is not without practical problems. Obvious is the loss of life, and its effect on the family and health care team. It is important that the health care team follow up and support the family, whatever decision is made. Likewise, it is beneficial to have an autopsy to construct outcome data; however, this is not routine in the United States. With termination, there is also the loss of opportunity to improve therapy— both fetal and postnatal—for those who are born with that condition. Again, centers of excellence would allow better evaluation of available data. Finally, is there a loss of self-esteem by those individuals living with these conditions? How can we better support them? Societal support for patients with disabilities has increased during the past 25 years, but it still has many deficiencies.
1096
Understanding and communicating the complexity of these medical and ethical problems is critical if we are to succeed in improving care for the fetus with urologic anomalies. REFERENCES 1. Chervenak FA, McCullough LB, and Kurjak A: An essential clinical ethical concept, in Chervenak FA, and Kurjak A (Eds): The Fetus as a Patient. New York, Parthenon Publishing Group, 1996, pp 1–9. 2. Pelligrino ED: The metamorphosis of medical ethics. JAMA 269: 1158 –1162, 1993. 3. Beauchamps TL, and Childress JF: Principles of Biomedical Ethics. New York, Oxford University Press, 1979. 4. Freedman AL, Bukowski TP, Smith CA, et al: Fetal therapy for obstructive uropathy: diagnosis specific outcomes. J Urol 156(Pt 2):720 –724, 1996. 5. Chervenak FA, McCullough LB, and Campbell S: Is third trimester abortion justified? Br J Obstet Gynecol 102: 434 – 435, 1995. 6. American Academy of Pediatrics: Fetal therapy— ethical considerations. Pediatrics 103: 1061–1063, 1999. 7. Petrini J, Damus K, and Johnston RB Jr: An overview of infant mortality and birth defects in the United States. Teratology 56: 8 –10, 1997. 8. Ewigman BG, Crane JP, Frigoletto FD, et al, for the RADIUS Study Group: Effect of prenatal ultrasound screening on perinatal outcome. N Engl J Med 329: 821– 827, 1993. 9. Drake H, Reid M, and Marteau T: Attitudes towards termination for fetal abnormality: comparisons in three European countries. Clin Genet 49: 134 –140, 1996. 10. Baldwin JM: Ethics in obstetrics and gynaecology: from theory to practice. Br J Obstet Gynecol 102: 501–504, 1995. 11. Simms M: Letter to the editor re: Is third trimester abortion justified? Br J Obstet Gynecol 103: 187–188, 1996.
UROLOGY 54 (6), 1999