Chapter 9 :Severely Impaired Newborns and Infanticide
READING:

Life-and-Death Decisions in the Midst of Uncertainty

Robert Weir

Infants are not persons but they are "potential " Persons and therefore have human rights. All infants should be treated according to what is in their BEST INTERESTS and there are criteria for such determinations. Parents and doctors should make the decisions considering ONLY the infant's interests.

Summary by Stephen Tiffany (2002)

Author: Robert F. Weir

Title: Life-and-Death Decisions in the Midst of Uncertainty

Reprinted in: Munson, Ronald., Intervention and Reflection: Basic Issues in Medical

Ethics., 6th Edition., Wadsworth-Thomas Learning, CA.

Robert Weir begins his article by defining and explaining the characteristics of the Neonatal Intensive Care Unit (NICU). He then poses the question: Do neonates count as persons?, the crux of determining what is in the best interests of each individual neonate. If a neonate who is not traumatically neurologically impaired is a potential person, then that neonate has the same basic human rights as any other person. Regardless of their potentiality, all infants have the right to be served in ways that reflect their individual best interests, and it is to this end that Weir frames the discussion.

For a neonate to possess human "personhood," it is argued that the individual must develop three basic or "commonsense" (Feinberg, Joel., Text., p. 164)) "person making characteristics." These are: 1) a significant amount of neurological development; 2) a lack of an overwhelming amount of neurological impairment; and 3) the potential to become a person. These seemingly innocuous considerations need to be emphasized, quantified and qualified. If the neonate is too severely impaired, not truly defined or definable as of this writing, then that neonate may not possess adequate, another quantifier that is not exact, neurological development to qualify as having the potentiality of personhood. This places the determination of the future of the impaired neonate in the hands of an inexact science that is trying, at all costs, to do the best it can and to keep the best interests of the neonate in the foreground of all decisions.

Weir explains that there are three positions generated by the three neurological concerns listed above. The first position is that all neonates, both normal and neurologically impaired, are non-persons; the second is the antithesis of the first; the third, and the one that Weir considers most relevant and useful, is that most neonates are potential persons. This last position, one that is less extreme than the other two, embodies the following four claims: (Text., p. 164)

Personhood is a moral category attaching to beings (of any species) with certain characteristics, principally cognitive capacities;

Neonates lack the intrinsic qualities that make a human into a person, as do fetuses;

Having the potential to become a person through the normal course of development does count, and neonates without severe neurological impairment (and fetuses having exhibited brain activity) have this potential; and

All potential persons have a prima facie claim to the moral benefits of personhood, including the right not to be killed, because they will subsequently acquire an actual person’s moral and legal right to life.

After this explanation, Weir poses the question: What is the best ethical option for making decisions to initiate, continue or abate life-sustaining treatment?, to which there are many possible answers along the continuum from the very liberal to the very conservative and governed, in part, by some federal regulations and guidelines that have emerged as the question has been brought more and more into the public realm. The case of "Baby Doe" resulted in the enactment of public policy that makes it impossible to opt for less than maximum life sustaining treatment in all but a very few, highly delineated situations by Surgeon General C. Everett Koop, Ronald Reagan’s conservative appointee. Only those infants who are irretrievably dying or possibly in a state of permanent unconsciousness would be permitted to expire without trying everything known to medical science to sustain their lives.

Diametrically opposed to this, the liberal position claims that we are only obligated to provide life-sustaining treatment and care for those neonates who count as persons. This is, as we understand from the initial arguments, at best, difficult to determine when it is a question of the neurologically impaired neonate. There is no way to identify a "magic moment" at which the very young become persons in their own right and it is the reason, Weir argues, that the very liberal position on personhood and the right to continued life can never become public policy.

A third position, and one that makes a great deal of sense, is that the parents of all neurologically impaired neonates are the people whose lives will be most directly affected and effected by the continuation of the life of the neonate. As such, it is their right, and their right alone, to make the decision about what treatments, if any, to pursue. This is not a legal position and it is not permitted at this time.

A fourth group of people who take the position that the most important consideration is the quality-of-life that the impaired neonate can expect to achieve. If, after careful consideration and discussion among all of the people involved with the neonate’s care, it is determined that there is no real quality-of-life to be anticipated, then the rational and moral choice is to terminate all life sustaining measures.

Finally, and from Weir’s perspective fortunately, there are those people who concern themselves with the best interests of the neonate. These people hold that life-sustaining treatment should be terminated, or never undertaken, when the neonate or the severely impaired young child cannot benefit from these treatments … when the treatments are clearly no longer in the best interests of the recipient but are concerned instead with the best interests of the care givers. These people who argue for the best interests of the neonate agree with the quality-of-life group when the latter are concerned with the interests of the children. They are in disagreement when the quality-of-life advocates are more concerned with the welfare and existence of the families than with those of the neonate or young child. There are instances when quality-of-life and best interests of the recipient are not equal.

Weir’s next question is: What does "best interests" mean when persons are neonates? He explains that the best interests of the neonate are often vague and ill defined. Even so, using the best interests concept allows decisions to be made with a clear focus on what serves the life of each individual neonate. Martin Benjamin, in contrast with the best interests theorists, "argues that neonates … do not possess the cognitive awareness … specific wants and purposes, that are necessary for ascribing to them an interest in continued life." (Text. p. 166) When the best interests concept is applied to infants, Howard Brody believes that it is doomed to failure as a result of its inability to guide coherent and adequate clinical decisions when these are not clear-cut. (Text., p. 166) The adult decision makers, he claims, cannot know the interests of infants. In order to truly develop interests, a person must be conscious. It is necessary to be a person in order to have interests, not simply instincts and sensations.

On the other hand, Joel Feinberg discusses the pre-personhood of the fetus and suggests that the neonate has future interests that must be considered when determining how to act in its best interests. This concept is grounded in law where a fetus can be granted certain contingent rights to inheritance, property, etc.

If we rely on the common philosophical view that "neonates without severe neurological impairments are to be regarded as potential persons," (p. 167) then we ascribe future interests to them because they will acquire these interests along with normal development. Potentiality is fundamental to the concept of personhood and to understanding the distinctions between interests and legal rights. This concept of potentiality permits us to assign the most basic and general interests to the neonate. This means that, as for the majority of people receiving medical intervention, the health care professionals will provide the most helpful treatments and will cause the least harm. Except in cases where life is unconditionally threatened or unbearable, most people choose medical intervention because they wish to continue to live. When this is ascribed to neonates, it can be reasonably said "that all neonates lacking severe neurological impairment … have this future interest in not being harmed, an interest that will become actualized as they become persons during the normal course of development."

In the NICU the caregivers must try to decide what factors to consider in each case. It is difficult to determine what is actually in the best interests of the neonate who needs to be in the NICU. Weir suggests a standard that includes the following eight variables: (p.167)

Severity of the patient’s mental condition;

Availability of curative or corrective treatment;

Achievability of important medical goals;

Presence of serious neurological impairments;

Extent of the infant’s suffering;

Multiplicity of other serious medical problems;

Life expectancy of the infant; and

Proportionality of treatment-related benefits and burdens to the infant.

In reality, the decision makers must try to determine the long- and short-term benefits to the infant in deciding what treatments to undertake. It is never completely possible to arrive at a totally objective decision regarding the continuation or abatement of life-sustaining treatments. The decision makers must weigh the objective criteria while coming to a subjective conclusion.

Finally, Weir asks: Should life-sustaining treatment for neonates and other young children ever be abated for economic reasons? Neonatologists, Weir tells us, have traditionally believed that the best interests of the infant should be considered alone, with no thought for the cost, the interests of the family, the interests of society or any other consideration. This basic morality regarding neonates has come into question recently, in part due to the ever-increasing ability to preserve the life of the severely impaired and the extremely premature. Everyone is more attuned to the costs of preserving a life that will never develop to its full potential. As of now there is no real understanding of the cost-effectiveness of neonatal care in the NICUs and PICUs. What is clear is that the bill for treating these infants is astronomically high and it can frequently destroy families. Additionally, some of babies are kept alive only to remain institutionalized or even hospitalized for months and years because they are unable to survive without constant care and monitoring.

There are several answers to what can be done to deal with some of these variables. One thing is that we can revise or ignore the federal regulations and, on the basis of parental discretion or projected quality-of-life, discontinue life-sustaining measures more quickly. This would decrease the expenses of the NICUs but, at the same time, it would make the cost factor paramount in determining whether to treat a neonate in need of the NICU. Expense can never be the best scenario for ethical considerations that are to be guided by the principles of beneficence, non-malfeasance and justice. Weir contends that an alternative needs to be developed that combines continued use of the eight variables to determine best interests, establishment of a national policy that would restrict neonatal intensive care based on birth weights, and establishment of national health insurance that would cover the extensive costs of neonatal intensive care. (Text. p. 167) If these guidelines were invoked, there would be more decisions to terminate the life of severely impaired neonates based on a realistic view of the best interests of the child; they would eliminate some of the uncertainty and a great deal of expense in the NICU by establishing a minimum birth weight below which neonates would not be eligible for treatment; and the federal government would have to accept the burden of the costs involved in continuing life-sustaining treatment for severely impaired and premature neonates. As it stands now, the government would like to insist that all neonates receive all possible treatment, but the government abrogates any responsibility it might have for assuming the financial burden that this places on individual families. In the current climate of extreme uncertainty, parents and physicians must make their decisions about continuing or abating life-sustaining treatment for neonates with no real support from the greater society.

 

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