Neonatal Care Ethics
During the year 2000, there were over 4.5 million births in the United States. Nearly 12% of these births were defined as premature, that is, occurring at less than 37 weeks gestation, and 1% of these births were infants weighing less than 1,500 g. We have developed specialized expertise and technologies in order to take care of the smallest of these very low birthweight (VLBW) infants, referred to as “micropremies.”
Mortality and morbidity, in general, inversely correlate with gestational age and birthweight of infants born prematurely. The neonatal mortality rate drops significantly at 1,000 g, which typically correlates with a gestational age of 27 weeks. Currently the limit of our ability to resuscitate an extremely premature newborn is 22 weeks of gestation or just over half of a normal gestation of 40 weeks. More than half of these infants do not survive despite intensive efforts and the survivors most commonly experience enduring deficits and morbidity. Morbidity associated with extreme prematurity includes: cerebral palsy, which is a nonprogressive neuromuscular disorder involving primarily the extremities often with associated cognitive defects; bleeding in the brain (intraventricular hemorrhage, IVH), bleeding-related swelling of the brain (posthemorrhagic hydrocephalus) and conditions affecting the white matter of the brain (periventricular leukomalacia, PVL); chronic lung disease sometimes necessitating a home ventilator; disorders of the eye (retinopathy) of prematurity, which in some cases can lead to vision difficulties or retinal detachment and blindness; hearing loss; and long-term growth and development delays.
Along with the ability to save some of the smallest babies come many ethical considerations. Four central ethical concerns in the clinical care of premature infants relate to: (1) the process of obtaining informed consent for these interventions; (2) the quality of life we are creating for a population of former extremely low birthweight infants and their families; (3) optimal approaches to palliative care for these critically ill infants; and (4) the distribution of scarce societal resources and technology for the entire neonatal population.
In theory, informed consent occurs in a context of trust and understanding and is predicated on three elements: a substantive process for information sharing; the ability of the appropriate decision-maker to make knowledgeable, reasoned, and meaningful choices; and the ability to make decisions freely and in the absence of coercive pressures. In reality, the existence of true informed consent in the neonatal intensive care unit (NICU) is often under debate. Neonatologists (doctors who care for premature infants) are asked to explain the risks of delivering a premature infant to mothers and families at moments of extreme vulnerability in the mother’s life: she is in preterm labor, or ill herself and hearing for the first time that she is having a premature infant; these are also conversations that may be rushed due to clinical circumstances. The detail and significance of these discussions must increase with the decreasing gestational age of the infant. There are a variety of issues that need to be reviewed. These encompass the risks of cardiopulmonary resuscitation in the delivery room, the possible clinical course while in the neonatal intensive care unit, including the types of respiratory support available to these infants such as specialized mechanical ventilation (high-frequency ventilation), the possibility of surgery to correct a heart defect (patent ductus arteriosus), the occurrence of IVH and PVL, and the inherent risks of long-term neurodevelopmental disabilities associated with an extremely low birthweight infant.
Inherent in the ability to resuscitate an extremely premature infant is the decision of whether to do so. This decision comes to intimately involve both parents and physician. Consent discussions are shaped by evidence and standards of care, but personal values, cultural influences, and religious beliefs affect the family’s understanding of what is good and right and possible. The values of clinicians and counselors may enter into these discussions, as it is often difficult to be completely “objective” in the face of such uncertainty and risk. In present-day medicine, parents hold ultimate responsibility for the choices made in the care of a premature infant, even if it is the clinician who must present and, at times, guide these choices. It is apparent that this represents an extraordinary and often painful burden for the family to shoulder. Sensitive, supportive efforts on the part of the clinical team can make the process less difficult. Ongoing discussions after the infant is born are also important; it may not be until birth of the infant that the family truly develops an understanding of the type of support that children born prematurely will require.
QUALITY OF LIFE
The eventual quality of life for a premature baby is greatly influenced by gestational age at the time of birth.
Infants born at the limits of viability, that is, 22-25 weeks, tend to be the most profoundly affected in their neurodevelopmental outcomes. Unfortunately we have no way of foretelling which infants may eventually have deficits; the prognostic ability of head ultrasounds demonstrating bleeding in the brain (IVH) is called into question in the extremely low birthweight population. We do know that when surveyed, parents of VLBW infants with developmental delay feel no worse impact than those families with normal term infants. In addition to the ability to “save” extremely premature infants we have also advanced technology with regard to the surgical correction of many previously lethal deformities. We have seen advances in the repair of severe bowel diseases. The diagnosis of abnormal placement of the tissue beneath the lungs (congenital diaphragmatic hernia, CDH) is no longer a death sentence and congenital heart disease including underdevelopment of the heart (hypoplastic left heart syndrome) is readily correctable at large institutions via staged surgery or cardiac transplant. Fetal therapy is available for some surgical interventions including correction for CDH and fetal gene therapy is on the horizon for inheritable diseases such as some types of disorders of immune system functioning (severe combined immune deficiency).
Optimism about the health outcomes of premature infants is often well founded. Moreover, even when deficits persist, the physical difficulties accompanying prematurity are not determinant of one’s eventual strengths and capacities, nor are they predictive of one’s sense of personal satisfaction, life meaning, individualism, and societal contributions. This said, there are very real concerns about the very devastating health outcomes experienced by many of the littlest or sickest of premature infants. These issues merit our continued attention as technological abilities push back the defining line for infant viability.
PALLIATIVE CARE APPROACHES
It is increasingly acknowledged that integrated palliative care and pain programs are central to optimal care for infants. Dismissed are the thoughts that infants do not experience pain as older children and adults do, and modern training in neonatology includes skills in evaluating and treating the pain of infants just as in the care of patients by other subspecialties. Palliative care consultation services are slowly making their way into the neonatal intensive care unit. When the time comes for palliative care in the infant’s life we must apply what we have learned from other populations. Easing the passage to death is a gift the physician can give the family and their baby. Palliative care studies in infants demonstrate that fewer medical procedures are performed and more supportive services are provided to families that are involved with palliative care consultation. As the availability of palliative care programs increases we will see a greater number of clinicians skilled in providing pain relief, emotional support, and access to services for these families to ease their burden.
One consideration that permeates all of medicine, and especially intensive care medicine, is the challenge of appropriate resource allocation. Costs associated with successful resuscitation of the very littlest of newborns are substantial, and they are overshadowed by the costs of caring for children and adults with the sequelae of prematurity. Creating a health care system where pregnant women have access to the prenatal care that they need may have the biggest impact on the rate of premature birth over the next decade. It is encouraging that the rate of premature birth declined in 2000 for the first time in over a decade from 11.8% to 11.6%. However, lack of access to prenatal care remains a huge contributor to the rate of premature births, especially in rural and poor areas of the country. Without serious attention to this issue, this will become a worsening problem in coming years.
Until premature birth can be prevented there will be challenges surrounding the care of the VLBW infant. There are difficult decisions to be made regarding consent of the family in danger of delivering a very premature infant, resuscitation of that infant, long-term quality of life for the infant and family, and when treatment fails providing a pain-free death with dignity, which also provides emotional support for the family. The best care will be provided by physicians and support staff working closely with families to alleviate some of the inherent emotional distress associated with neonatal intensive care unit care.
SEE ALSO: Informed consent, Prenatal care
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