Decreasing Disabilities by Letting Babies Die

By Marmion, Patrick J. | Issues in Law & Medicine, Fall 2018 | Go to article overview

Decreasing Disabilities by Letting Babies Die


Marmion, Patrick J., Issues in Law & Medicine


A woman may give birth prematurely due to pregnancy complications such as preterm labor, preterm rupture of membranes, restricted fetal growth or toxemia. Such a woman is usually hospitalized for several days or weeks prior to delivery, or she may appear "just in time" in advanced labor with an imminent delivery At certain gestational ages, premature babies have a significant chance of being disabled if they survive. Surviving babies born at less than 26 weeks gestation may have a persistent neurologic disability known as Neurodevelopmental Impairment [NDI]. NDI is graded as moderate to severe or profound. A child is classified as having moderate NDI if moderate cerebral palsy, bilateral blindness, or bilateral hearing loss requiring amplification is present. A score of less than 70 on either the Psychomotor Developmental Index or the Mental Developmental Index of the Bayley Scales of Infant Development is classified as moderate NDI while a score of 50 is severe NDI. If adult assistance is required for the child to move, profound NDI is present. (Tyson 2008, 1673).

There are no physical findings at birth that can predict whether a baby born at less than 26 weeks gestation will live, let alone whether it will suffer a disability. Describing dramatically different possible outcomes, health care providers may give conflicting advice in these situations. A neonato logist might tell a family that their baby born at 24 weeks gestation will have a 91% chance of dying or surviving with a serious handicap and therefore treatment would be futile and not recommended. Yet another neonatologist could tell the same family that if their baby survives it would have a 37% chance of being neurologically normal and therefore treatment is recommended. To resolve potential conflict, the hospital developed guidelines that gave parents a consistent professional prognosis for their baby who was about to be born before 26 weeks gestation. The premise was that parents should have the right to decide what is in their best interests. A subsection of the medical staff at the hospital voted and the results tallied to demonstrate a consensus that enabled this Catholic hospital to institute mandatory guidelines requiring adherence by doctors and nurses when counseling families. These "Periviability Guidelines" were published in 2006 and they allow physicians to counsel parents to deny life-sustaining medical care for their babies born before 26 weeks gestation (Kaempf 2006, 26). These are babies that are born about 3.5 months early and weigh less than 800 grams, or 1-pound 12-ounces. The result of implementing these guidelines is the death of many babies who would have survived if treated.

Background

The ethical foundation of modern medicine has moved from an ethic based on the sanctity and dignity of every human life to an ethical framework constructed around the principles of autonomy, beneficience, non-malfeasance and justice. None of these principles defend the intrinsic value of all human life (Pierucci 2014, 435); in application, these principles assume that some human lives are more valuable than others. Many modern ethicists proclaim that being a human does not make one a person. The human non-person is not due the same healthcare considerations as a person.

Autonomy

Labeled as human but a non-person, a preemie at the borderline of viability is treated more like a fetus than a child. At the hospital, parental rights are similar to the rights of a pregnant woman to abort a fetus. These preemies are not eligible to be treated according to the ethical principles we apply elsewhere. With adults, other people make treatment decisions only in exceptional cases. This is not the case in the nursery: the premature baby's interests are subordinate to the parents' interests. Once the decision to deny treatment is made, the neonatologist will not be present at the baby's birth (Marmion 2018, Linacre Q, 9). This would not be acceptable for adults: the family makes the decision to withhold treatment only after having an examination and getting an official prognosis. …

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