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Authors:
Andrew C. Beckstrom, MD and David E. Woodrum, MD
Core clerkship material for: Obstetrics and Gynecology
Related Discussion Topic: Parental Decision Making
Topics addressed:
- What is the primary justification for the existence of neonatal intensive care units?
- Is there an increased morbidity associated with higher survival rates?
- Do survivors and families think that aggressive care for very low birth weight infants is good?
- Is it possible to predict which infants will not survive despite aggressive medical/surgical care in the neonatal period?
- Who is the decision-maker regarding the nature of medical care administered to a newborn infant?
- What is the accepted legal and ethical basis for decision-making regarding the nature of medical care in the newborn infant?
- What cost-burden does the neonatal intensive care unit (specifically extremely low birthweight infants) place on the health care system?
The evolution of aggressive treatment of the newborn infant over the past 45 years has been associated with a dramatic reduction in mortality for virtually all major disease categories in the newborn period. Such care is costly; often causes suffering; and sometimes can result in considerable long-term morbidity.
The following quotes provide a perspective:
- Neonatal intensive care is responsible for the survival of a significant number of infants who formerly would not have survived. This increased survival has been accomplished with an acceptable level of burden and without substantially increasing the population of handicapped children.
- A proponent
- Neonatal intensive is a good example of medicine out of control. There is inappropriate use of technology by health care professional who are out of touch with patients and their families. The benefits of increases survival of high risk infants are outweighed by the associated burdens.
- An opponent
What is the primary justification for the existence of neonatal intensive care units?
Increased survival in all birthweight categories from extreme prematurity to term infants with complex congenital anomalies.
| Low Birthweight Survival (%) | |||||||
|---|---|---|---|---|---|---|---|
| Est. G.A.* | Birthweight (gm) | Before 1970 | 1980 | 1990 | 1997 | 2007 | |
| 23-24 wk. | 500-599 |
Less than 10 % Survival |
|
35
55 |
22 | 29 | 47 |
| 24-25 wk. | 600-699 | 47 | 61 | 75 | |||
| 25-26 wk. | 700-799 | 89 | 85 | 82 | |||
| 26-27 wk. | 800-899 | 80 | 81 | 81 | |||
| 900-999 | 90 | 90 | 90 | ||||
|
(University of Washington NICU Data Base) |
|||||||
| Infant Mortality by Selected Causes (Deaths per 100,000 live births) |
|||||||
| 1970 | 1984 | 1997 | 2006 | ||||
| Congenital Anomalies | 302 | 228 | 156 | 136 | |||
| Respiratory Distress Syndrome | 156 1979) |
103 | 32 | 19 | |||
| Intrauterine Hypoxia (Birth Asphyxia) | 253 | 26 | 11 | 8 | |||
| Disorders relating to short gestation and low birthweight | 234 | 100 (1979) |
96 | ||||
| Data source: National Center for Health Statistics | |||||||
Is there an increased morbidity associated with higher survival rates?
Long-term follow up studies of NICU very low birth weight survivors demonstrate that while many are normal(16%) , there are significant numbers of children with mild(39%), moderate(31%), and severe(14%)Â handicapping conditions. Major neurodevelopmental handicaps include cerebral palsy, mental retardation, blindness, and deafness. Less severe conditions include lower IQ, learning disabilities, mild movement disorders, etc. (See: “Neurodevelopmental disability through 11 years of age in children born before 26 weeks of gestation.” Pediatrics. 2009; 124; e249-e257.)
Data pertaining to the long-term impact of the survival of infants with complex congenital anomalies are less plentiful, but indicate an increased number of handicapped individuals who survive the neonatal/infancy period following successful life-prolonging treatment.
Do survivors and families think that aggressive care for very low birth weight infants is good?
Self-assessment research of a large group of adolescents, former extra-low birth weight infants, demonstrates that their view of their quality of life was "quite satisfactory". Indeed, when compared to a comparable age group of normal controls, there were few differences between the two groups in their perception of their quality of life. Similar studies have found comparable quality of life assessment with adolescents with and without cerebral palsy, a known complication of prematurity. Physicians judge former premature infants’ quality of life lower than former premature infants and their families judge themselves.
Is it possible to predict which infants will not survive despite aggressive medical/surgical care in the neonatal period?
Many researchers have evaluated population-based studies looking at mortality and morbidity (above data). Although general risks can be identified, there are no successful models to assess individualizable predictability of death or disability. Illness severity scores (SNAP-II, CRIB scores) and health care provider intuition scores exist, but none have been validated to predict individual outcomes. Decisions regarding treatment options must be based on population-based studies, physician recommendations, and parental perspectives.
Who is the decision-maker regarding the nature of medical care administered to a newborn infant?
The biological parents (or parent) have authority regarding the decisions for their child (known as parental authority). This is a universally granted right regardless of the parents' age or other contextual features, unless the parents are declared not competent or otherwise unfit to serve as the child's proxy. There are some limits to such authority. For example, when the discussion occurs in the context of delivery room management of extreme prematurity, usually parents wishes (whatever they may be) are followed at 23 and for the most part 24 weeks gestation. Whereas at 22 weeks most neonatologists are reluctant to aggressively resuscitate and at 25 weeks reluctant to withhold such care. (See “Resuscitation in the Gray Zone of Viability: Determining Physicians Preferences and Predicting Infant Outcomes.” Pediatrics. 2007;120;519-526. (See also Parental Decision Making).
What is the accepted legal and ethical basis for decision-making regarding the nature of medical care in the newborn infant?
The child's best interest is legally and ethically primary and should be weighed over the family's well-being or societal concerns (using the Best Interest Standard). However, there is considerable discussion in the literature about the utility of applying this standard to neonates based on their present or future best interest. Also, much discussion is placed on the need to include the family's interests when making life and death decisions regarding severely compromised infants. In the interest of justice, societal concerns about excessive cost for aggressive care should be addressed at the policy level, rather than on an individual or case-by-case basis.
What cost-burden does the neonatal intensive care unit (specifically extremely low birthweight infants) place on the health care system?
As of 2001, newborn care cost the healthcare system over $12 billion. Of that, preterm or low birthweight infants generated 47% of this healthcare expense. On average, a preterm infant’s hospital stay costs $15,000/patient, with extremely premature infants (<28 weeks) costing an average $65,000/patient (information adapted from Russell et al 2007). Although these costs are individually high, only 1-2% of preterm infants are born <28 weeks gestation. The largest financial burden to the healthcare system is generated by late-preterm infants (born at 34+ weeks gestation). In fact, if healthcare were rationed to exclude medical care to infants born <27 weeks gestation, it would only save the healthcare system 6% of its annual newborn care expenditure.