In an age when accountants influence who will be treated, the wellfare of the critically ill newborn needs protection through the tort system. Rather than parents and physicians deciding the care of the critically ill newborns, these decisions are being made by third-parties.
As our modern health care system changes its form, we as a population are allowing important social decisions to be made by accountants and economists. The legal status of critically ill newborns is a prime area in which someone other than third-party payers ought to be engaging in debate. …/…
Modern medicines and technology have achieved impressive gains in the survival rate of low birth weight babies, and in keeping alive children with congenital problems who in the past would have died. The cost of accomplishing these objectives is astronomical and the bean-counters are suggesting that the benefits are not worth the costs.
The Moral Debate
Apart from cost analysis, it is a legitimate moral question whether the quality of life of a surviving infant is so compromised that life-saving intervention is not appropriate. A second debate centers on whether, if treatment is statistically futile, it should be attempted at all. If appropriate treatment will postpone death, is it worth doing?
Low birth-weight and very premature babies constitute the great majority of critically ill newborns. It is significant that a great number of these problems could have been avoided had efforts been made to educate pregnant women and provide adequate prenatal care and nutrition. …/…
Until the revolution in health care, the decision whether to intervene was made by parents in consultation with treating physicians. Today, more and more third-party payers are attempting to make these decisions. The law has not yet determined whether the third-party carrier’s decision-making changes the standard of care to which physicians are being held.
II. Critically Ill Newborns
Courtroom Decisions & General Information
It has been argued that tort law, child abuse statutes, the Americans with Disabilities Act, and the Emergency Treatment and Active Labor Act require aggressive treatment when such treatment is medically futile. In fact, the law does not require futile treatment but rather tests the decision-making on a standard of whether a more aggressive approach would probably have made a difference.
In February of 1994, the Fourth Circuit made an extraordinary decision when it mandated that a sixteen-month old anencephalic child be treated for respiratory distress with mechanical ventilation. Anencephaly is a congenital condition in which a part of the brain is missing and the patient is permanently unconscious and will usually die shortly after birth. The decision to require mechanical ventilation calls into question all of the ethical and legal policy issues that we as a society need to address.
It is accepted that if medical care does not benefit the patient, it is inappropriate. The next question is: where expensive medical care will benefit the patient but only for a short time, should society’s resources be used?
It has been estimated that about 7% of all newborns in the United States are classified as low birth weight babies. These 7% account for more than one half of all neonatal costs. …/…
Mortality rates do not seem to improve with aggressive treatment for babies born in less than 25 weeks of gestation or with a birth weight below 750 grams. Some LBW babies do well and some die, but intervention does not seem to change those statistics. Thus, it has been suggested that significant amounts could be saved by not aggressively treating LBW babies and allowing nature to take its course.
A second group of patients who are commonly admitted into neonatal units consist of patients with congenital anomalies such as Downs Syndrome or spina bifida. Should the quality of life of these children, should they survive, be considered in deciding how aggressive an intervention should be? Who should be the decision-maker, the parents or some third-party carrier?
If doctors do not intervene aggressively, and that failure constitutes a deviation from standards, then of course the courts will provide a remedy and the threat of that remedy will probably keep the accountants from being able to make the final decision.
There have been a number of administrative battles dealing with the care of critically ill newborns. The 1984 amendment to the Child Abuse Prevention and Treatment Act defined medical neglect as “failure to respond to the infant’s life threatening conditions by providing treatment. . .which in the treating physician or physicians’ reasonable medical judgment, would be most likely to be effective in ameliorating or correcting all such conditions.” This requirement has exceptions for when the infant is chronically or irreversibly comatose, or when the treatment would merely delay dying or would be inhumane. …/…
The Fourth Circuit in the Baby K case determined that the provisions of the Emergency Treatment and Active Labor Act mandated the treatment of Baby K even though under the Child Abuse Act such treatment would be deemed futile. According to the Court, the language of the statute did not create an exception for anencephalic infants in respiratory distress.
III. Best Interest Of The Child
I do not suggest that there are easy answers to the question of what kinds of services critically ill newborns ought to be receiving. There is no question that the economic and social costs for dealing with the children are immense. The issues themselves are complex and various participants in a particular case may have differing agendas and goals. The infant has the greatest interest, but it can neither give consent nor informed refusal. Parents, acting as surrogates, have been the historical decision makers, but now the Government and third-party carriers are trying to intervene in that process. The child abuse amendments, for example, have reduced parental authority in the decision making process. Physicians must act within the confines of the law as adopted by both the Federal and State Legislatures and as interpreted by the courts. To do otherwise would make them liable under medical negligence statutes. …/…
The fundamental question the decision makers seem to be avoiding is “what is in the best interest of the child?” Should quality of life issues be a factor? The child abuse amendments have ruled that out. Competent adults are allowed to refuse treatment on the basis of quality of life issues, but it is unlikely that they have the right to make that decision for an infant.
If a parent attempts quality of life decision making, is it really in the best interest of the child or might it be in the best interest of the parent? Should the parent be allowed to suggest that a Downs Syndrome child or a child with spina bifida be allowed to die? Certainly, under some circumstances, such a decision would constitute child abuse.
It is clear that critically ill newborns are in need of protection. The public policy arena is being misused to either provide medically futile treatments or to refuse to provide necessary treatment. We as a society need to evaluate these kinds of social decisions. Until we have done that and until the decision-making has been clarified, the tort system is the best hope for protecting the critically ill newborn. It is the tort system that will say that the decision-making must be in the best interest of the newborn and that medical decisions will be tested by that equation.