Preterm Birth Causes, Consequences, and Prevention (2007) / Chapter Skim
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Appendix C A Review of Ethical Issues involved in Premature Birth
Appendix C A Review of Ethical Issues involved in Premature Birth
Pages 644-687
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We focused our initial literature searches on empirical studies and added judicial decisions, commentaries, and ethical analyses to complement the data. There are many ethical issues related to prematurity for which there are no empirical data, and we have commented accordingly.
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From page 645... ...
However, health care professionals play an important role in determining what actions are, in fact, in a child's best interest, leading to a more complex "negotiated" decision-making process. Ethical dilemmas may arise when parents and the medical professionals caring for their infants disagree on the best course of action.
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We first present data on parental perceptions, followed by data on health care professionals' perceptions and studies that have combined both groups. Most of the following data were collected outside the United States and thus may not reflect the attitudes of families and the practices of physicians in the United States.
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survivors, neonatologists, and neonatal nurses, nearly all parents and more than three-quarters of the health care professionals either agreed or strongly agreed that the parents should have the final word regarding the initiation or the limitation of treatment. In contradiction to that finding, the health care professionals also agreed or strongly agreed nearly 100 percent of the time that doctors should make the final decision.
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648 PRETERM BIRTH they should have more of a role in decision making than the parents wanted to allow them (6)
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. Loretta Kopelman, a bioethicist who has written extensively about ethical issues in prematurity, recently proposed a negative version of the Best Interests Standard, which applies to incompetent individuals of all ages and (1)
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650 PRETERM BIRTH Although the 1994 State v. Messenger case in Michigan supported the right of a parent to refuse LSMT for a 25-week-gestation infant, the more recent Miller v.
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Empirical Data Regarding Informed Consent Concerns about the challenge of obtaining informed consent for neonatal resuscitation are reinforced by evidence that health care professionals incorrectly estimate survival and disability rates for ELBW infants. Achieving informed consent for procedures and research may also be problematic.
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652 PRETERM BIRTH fetal distress at 25 weeks gestation, which raised concerns for the authors that underestimation of the rates of survival and survival free of handicap was leading to inappropriate obstetric care. When compared with the authors' study that estimated rates of survival and that had been conducted 10 years earlier, estimates of survival had improved, but perinatal management had not changed adequately to reflect the improved rates of survival (15)
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653 APPENDIX C In the past 20 years, Chervenak, an obstetrician-gynecologist, and McCullough, an ethicist, have written extensively on the approach to maternal-fetal conflicts. They start with the concept of the fetus as a patient.
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654 PRETERM BIRTH not be used to implement treatment regimens .
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Professional Guidelines and Ethical Commentary on Fetal Intervention The AAP Committee on Bioethics published "Fetal Therapy -- Ethical Considerations" in 1999. This statement acknowledges the ethical issues inherent in fetal therapies as they relate to the best interests of both the fetus and the pregnant woman.
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They raised the following ethical issues: the risks and benefits to the pregnant woman, problems obtaining informed consent (i.e. "therapeutic misconception")
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657 APPENDIX C with multiple fetuses)
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658 PRETERM BIRTH those conceived by in vitro fertilization (IVF) , it was shown that twins conceived by IVF have a significantly higher incidence of preterm birth and a lower gestational age than twins conceived spontaneously (32)
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659 APPENDIX C neonatologist who always resuscitates newborns, no matter how premature.
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660 PRETERM BIRTH born "at any stage of development" who breathe, have a heartbeat, or "definite movement of voluntary muscles," regardless of whether the birth was due to labor or induced abortion (36)
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661 APPENDIX C The authors concluded that most respondents would provide treatment that was beneficial, withhold treatment that was of no benefit, and defer to the parents' requests when the benefits were uncertain (39)
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662 PRETERM BIRTH were resuscitated at 24 weeks, 93 percent were resuscitated at 25 weeks, and 100 percent were resuscitated at 26 weeks. The likelihood of resuscitation was associated with increasing gestational age, higher birth weight, a better prognosis for survival and quality of life, and greater physician uncertainty about the accuracy of the prognosis.
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The authors concluded that families should be the primary decision makers, with guidance from society and health care professionals. The authors' discussion raised many questions about the ethics of withholding or withdrawing treatments, including issues around unclear prognosis, informed consent, and proxy decision making (46)
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664 PRETERM BIRTH physicians and families should preclude the need for involvement of the law or ethics committees (47)
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665 APPENDIX C fants with severe neurological injuries (<5 percent in all 3 years studied)
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666 PRETERM BIRTH under such circumstances would be inhumane." Adherence to these rules is required for states to receive federal child abuse funds. The existing rules have remained untested in the Supreme Court (52)
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667 APPENDIX C Professional Guidelines for Limitation of LSMT in the United States There have been efforts over the past 15 years to develop a professional consensus on the limitation or withdrawal of LSMT from ELBW infants. Various committees within AAP have published guidelines for limiting lifesustaining treatments for newborns.
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668 PRETERM BIRTH Care of Critically Ill Infants and Children. The committee expressed concerns that the Baby Doe regulations had caused physicians to overuse LSMT.
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669 APPENDIX C experience, and religion, there were still important differences between countries, "suggesting an effect of cultural and social factors" (61)
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. At Children's Hospital of Wisconsin, a retrospective chart review evaluated the use of palliative care services in patients less than 1 year of age who died in the hospital over a 4-year period.
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Within the realm of neonatal care, the concept has been invoked in cases both of extreme prematurity and of severe congenital anomalies that are incompatible with survival. Futility arguments have been invoked when the health care team disagrees with parents regarding the provision of life-sustaining treatments to critically ill or severely neurologically impaired infants.
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672 PRETERM BIRTH tal went to court to have a guardian appointed and to obtain a declaratory motion to allow the provision of palliative care for the infant. The district court ruled that the hospital was required to continue to provide emergency treatment for respiratory distress under the Emergency Medical Treatment and Labor Act (EMTALA)
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The long-term costs to society of supporting disabled individuals who were born premature have long been a subject of controversy. As a whole, American society has been willing to provide basic social services to support individuals who were born premature infants and seems unlikely to consider limiting health care spending on the basis of the prognosis for the infants' future quality of life.
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. By using data from large national surveys of health behaviors and medical expenditures, it was estimated that LBW infants incurred more than one-third of all infant health care costs in the first year of life in 1988 ($4 billion of the $11.4 billion spent for all infants)
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In this study, nonsurvivors accounted for 8 percent of resource use by VLBW infants. The study was limited by its short-term assessment of costs, the biases incurred by studying the high-risk population of an academic metropolitan medical center, and a time period that spanned the introduction of surfactant.
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"preterm or low birth weight infants are significantly more likely to be rehospitalized" than term or normal-birthweight infants; (b) "the increased use and cost of health care services consumed by preterm or low birth weight infants persists into childhood," with major neurologic abnormalities increasing the families' use of hospital and outpatient services in the longer term; (c)
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677 APPENDIX C Empirical Data Concerning Access to Perinatal Care In a population-based cohort study done in South Carolina (from 1993 to 1995) , total birth weight-adjusted mortality rates were significantly higher in Level I and II perinatal centers than in Level III centers (as many as 267 deaths per 1,000 births in Level I centers down to 146 deaths per 1,000 births in Level III centers [p < 0.05]
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678 PRETERM BIRTH ropolitan and nonmetropolitan areas in the United States. By using data from the National Linked Birth Death Data Set obtained between 1985 and 1987, it was found that at the national level, residence in a nonmetropolitan area was not associated with a higher risk of LBW or neonatal mortality, although the risks of postneonatal mortality and the late onset of prenatal care were slightly higher.
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. ETHICAL ISSUES IN PERINATAL AND NEONATAL RESEARCH The ethical conduct of clinical research involving children was recently reviewed by the Institute of Medicine in a report published in 2004 (94)
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680 PRETERM BIRTH being included in the research, apart from any direct benefit from the research intervention (95, 96)
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681 APPENDIX C pregnancy resulted from rape or incest." Otherwise, the consent of the pregnant woman is sufficient. "For children as defined in §46.402(a)
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. State laws usually contain provisions for a minor to consent to health care (so-called mature minor statutes)
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683 APPENDIX C 9. American Academy of Pediatrics.
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684 PRETERM BIRTH 31. Schieve LA, Ferre C, Peterson HB, Macaluso M, Reynolds MA, Wright VC.
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685 APPENDIX C 54. Kopelman LM.
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686 PRETERM BIRTH 76. St John EB, Nelson KG, Cliver SP, Bishnoi RR, Goldenberg RL.
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687 APPENDIX C 94. Field MJ, Behrman RE, eds.
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