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Ethical dilemmas in perinatal medicine
Volume 96 Number 5
Editorial correspondence
Many reported cases of arthrogryposis multiplex congenita have respiratory distress in the neonatal period. We wonder if some of th~se patients could have had primary pulmonary hypoplasia. In none of the cases that we reviewed was this possibility investigated. The etiology of arthrogryposis multiplex congenita is not known but an intrauterine myopathy, prolonged intrauterine immobilization of the fetus with oligohydramnios, malpresentation of the fetus, or some combination of these conditions have been implicated? It could be speculated that restriction of thoracic volume during intrauterine life due to such factors might lead to primary pulmonary hypoplasia. Since sublethal forms of primary pulmonary hypoplasia exist? perhaps a second look at pulmonary function in neonates with arthrogryposis-like syndromes may be warranted.
Lawrence G. Leichtman, M.D. Burhan Say, M.D. Nancy Barber, M.D. 5300 E. Skelly Dr. Tulsa, OK 74135
REFERENCES 1. Swischuk LE, Richardson J, Nichols M, and Ingman M: Primary pulmonary hypoplasia in the neonate, J PEr~IAT~ 95:573, 1979. 2. Pena SDJ, and Shokeir MHK: Syndrome ofcamptodactyly multiple ankylosis, facial anomalies and pulmonary hypoplasia: a lethal condition, J PEDIAXR85:373, 1974. 3. Say B, Barber N, and Leichtman L: Ankylosis, facial anomalies and pulmonary hypoplasia syndrome: a case report, Am J Dis Child 133:1196, 1979. 4. Wyne-Davies R, and Lloyd-Roberts GC: Arthrogryposis multiplex congenita; search for prenatal factors in 66 sporadic cases, Arch Dis Child 51:618, 1976. 5. Askenazi SS, and Perlman M: Pulmonary hypoplasia; lung weight and radial alveolar count as a criteria of diagnosis, Arch Dis Child 54:614, 1979.
951
Because of the lack of this basic recognition of the limits of the scientific skills of medicine, students may not learn the humanities of medicine, such as dealing with the emotional and social needs of families of sick newborn infants, learning how to make ethical decisions, or helping patients and their families face death. Others have shown that lack of education can have a dramatic effect on residents' ability to deal with parents? As a result of these attitudes, housestaff begin work in neonatal units with misconceptions and naivet6 concerning ethical issues; however, with training these attitudes dramatically change? Likewise, parents have very naive misconceptions concerning medical skills. With few exceptions, the lay public reads only of the dramatic successes in the nursery. Many lay articles proclaim the success of saving an individual 600 gm infant; few reveal information about the high mortality or morbidity of certain high-risk infants? As a result of the source and extent of this education, parents have unrealistic expectations of neonatal technology that prevents them from confronting ethical issues intellectually or emotionally. 2. There is the need for multiple ethical decision points. It may be stated that there is a single decision for any one ethical dilemma. We believe that this attitude does not allow adequate flexibifity. For any given baby, family, and physician constellation there are numerous temporal decision points in the baby's course. For example, one may choose to support a dysmorphic infant until further data are collected and the parents are fully informed of the child's condition in order that they may participate in making any ethical decisions. As multiple complications develop in the course of care of a very low-birth-weight infant, the appropriateness of ICU support may be re-evaluated weekly or daily. The recognition that many of the effective newborn ICU techniques are supportive and not necessarily direct therapy is important. The responsibility to obtain as much information as possible to assess a specific infant cannot be overemphasized.
Carol Lynn Berseth, M.D. Ronald L. Ariagno, M.D. Stanford University School of Medicine Department of Pediatrics Division of Neonatology Stanford, CA 94305
Ethical dilemmas in perinatal medicine REFERENCES
To the Editor: We read Dr. Stahlman's editorial comment with great interest,1 since we agree that a variety of complex ethical issues arise in neonatal intensive care units (ICU). We think there are two additional points to be made. 1. W e believe that there is a desperate need for better education of parents and housestaff. We also think that many new housestaff are excellent technicians and pharmacologists, but few are able to help patients die. So many students are caught up in learning the technical skills of medicine that few learn that the technology has limits. Death is seen as personal physician failure-' rather than as a more cosmic event for the patient.
1. Stahiman MT: Ethical dilemmas in perinatal medicine, 3 PEI~IATR94:516, 1979. 2. Todres ID, Howell MC, and Shannon DC: Physicians reactions to training in a pediatric intensive care unit, Pediatrics 53:375, 1974. 3. Clyman RI, Sniderman SH, Ballard RA, and Roth RS: What pediatricians say to mothers of sick newborns. An indirect evaluation of the counseling process, Pediatrics 63:719, 1979. 4. Berseth CL, Kenny JD, Durand RE, and Rudolph AJ: Neonatal ethical attitudes of physicians and nurses, Pediatr Res 13:517, 1979. 5. Stinson R, and Stinson P: On the death of a baby, Atlantic Monthly 244:64, 1979.
Editorial correspondence
Many reported cases of arthrogryposis multiplex congenita have respiratory distress in the neonatal period. We wonder if some of th~se patients could have had primary pulmonary hypoplasia. In none of the cases that we reviewed was this possibility investigated. The etiology of arthrogryposis multiplex congenita is not known but an intrauterine myopathy, prolonged intrauterine immobilization of the fetus with oligohydramnios, malpresentation of the fetus, or some combination of these conditions have been implicated? It could be speculated that restriction of thoracic volume during intrauterine life due to such factors might lead to primary pulmonary hypoplasia. Since sublethal forms of primary pulmonary hypoplasia exist? perhaps a second look at pulmonary function in neonates with arthrogryposis-like syndromes may be warranted.
Lawrence G. Leichtman, M.D. Burhan Say, M.D. Nancy Barber, M.D. 5300 E. Skelly Dr. Tulsa, OK 74135
REFERENCES 1. Swischuk LE, Richardson J, Nichols M, and Ingman M: Primary pulmonary hypoplasia in the neonate, J PEr~IAT~ 95:573, 1979. 2. Pena SDJ, and Shokeir MHK: Syndrome ofcamptodactyly multiple ankylosis, facial anomalies and pulmonary hypoplasia: a lethal condition, J PEDIAXR85:373, 1974. 3. Say B, Barber N, and Leichtman L: Ankylosis, facial anomalies and pulmonary hypoplasia syndrome: a case report, Am J Dis Child 133:1196, 1979. 4. Wyne-Davies R, and Lloyd-Roberts GC: Arthrogryposis multiplex congenita; search for prenatal factors in 66 sporadic cases, Arch Dis Child 51:618, 1976. 5. Askenazi SS, and Perlman M: Pulmonary hypoplasia; lung weight and radial alveolar count as a criteria of diagnosis, Arch Dis Child 54:614, 1979.
951
Because of the lack of this basic recognition of the limits of the scientific skills of medicine, students may not learn the humanities of medicine, such as dealing with the emotional and social needs of families of sick newborn infants, learning how to make ethical decisions, or helping patients and their families face death. Others have shown that lack of education can have a dramatic effect on residents' ability to deal with parents? As a result of these attitudes, housestaff begin work in neonatal units with misconceptions and naivet6 concerning ethical issues; however, with training these attitudes dramatically change? Likewise, parents have very naive misconceptions concerning medical skills. With few exceptions, the lay public reads only of the dramatic successes in the nursery. Many lay articles proclaim the success of saving an individual 600 gm infant; few reveal information about the high mortality or morbidity of certain high-risk infants? As a result of the source and extent of this education, parents have unrealistic expectations of neonatal technology that prevents them from confronting ethical issues intellectually or emotionally. 2. There is the need for multiple ethical decision points. It may be stated that there is a single decision for any one ethical dilemma. We believe that this attitude does not allow adequate flexibifity. For any given baby, family, and physician constellation there are numerous temporal decision points in the baby's course. For example, one may choose to support a dysmorphic infant until further data are collected and the parents are fully informed of the child's condition in order that they may participate in making any ethical decisions. As multiple complications develop in the course of care of a very low-birth-weight infant, the appropriateness of ICU support may be re-evaluated weekly or daily. The recognition that many of the effective newborn ICU techniques are supportive and not necessarily direct therapy is important. The responsibility to obtain as much information as possible to assess a specific infant cannot be overemphasized.
Carol Lynn Berseth, M.D. Ronald L. Ariagno, M.D. Stanford University School of Medicine Department of Pediatrics Division of Neonatology Stanford, CA 94305
Ethical dilemmas in perinatal medicine REFERENCES
To the Editor: We read Dr. Stahlman's editorial comment with great interest,1 since we agree that a variety of complex ethical issues arise in neonatal intensive care units (ICU). We think there are two additional points to be made. 1. W e believe that there is a desperate need for better education of parents and housestaff. We also think that many new housestaff are excellent technicians and pharmacologists, but few are able to help patients die. So many students are caught up in learning the technical skills of medicine that few learn that the technology has limits. Death is seen as personal physician failure-' rather than as a more cosmic event for the patient.
1. Stahiman MT: Ethical dilemmas in perinatal medicine, 3 PEI~IATR94:516, 1979. 2. Todres ID, Howell MC, and Shannon DC: Physicians reactions to training in a pediatric intensive care unit, Pediatrics 53:375, 1974. 3. Clyman RI, Sniderman SH, Ballard RA, and Roth RS: What pediatricians say to mothers of sick newborns. An indirect evaluation of the counseling process, Pediatrics 63:719, 1979. 4. Berseth CL, Kenny JD, Durand RE, and Rudolph AJ: Neonatal ethical attitudes of physicians and nurses, Pediatr Res 13:517, 1979. 5. Stinson R, and Stinson P: On the death of a baby, Atlantic Monthly 244:64, 1979.