Who Decides Who Lives and Who Dies And Why?

When infants are born with life threatening impairments, we find a diversity of people making decisions concerning the future existence of these newborns. Everyone from the parents to the physicians to the federal government has claimed the right to decide the fate of the premature and/or medically impaired infants presented. The real questions are, 1) who is the ultimate authorization for such a claim and 2) by what criteria are they basing the decision?

In the case of Baby Doe, the parents and the physicians believed that their combined agreement was enough to pronounce a death sentence on their imperfect child. Was their assessment of the authority morally correct? Baby Doe had two impairments at birth, Down syndrome and esophageal atresia (a closure in the esophagus). Regardless of the fact that the surgery to repair the infant’s esophagus was relatively minor and chances were excellent that the baby would survive with little, if any, complications resulting from the operation, those who claimed responsibility for Baby Doe decided that her life was not worth saving. As a result, she starved to death in less than a week.

Maybe the question that should be asked in determining the morality of such a decision would be clearer if presented another way. Would the same decision have been made if Baby Doe had not been born with Down syndrome and only the esophageal atresia impairment? In other words, would the infant currently be a healthy adult if born it had not had Down syndrome? Which bring us to the next point of interest, if the decision to let the infant die is based upon medical impairments, we must consider the extremity of the impairments in order to outline which criteria must be met for an infant to be given a death sentence? Since we already know that the closure in a baby’s esophagus is easily repairable, how debilitating is Down syndrome and who suffers the most, the child or the parents? Many children with Down syndrome live happy, healthy, relatively long lives. They can and do become productive members of society and many parents have stated that such children bring a different, yet welcome atmosphere to a family. Parents have further stated that they enjoy a sort of enlightened perspective when raising a "special" child, an experience that did not accompany raising their "normal" children.

Because of these and other ethical considerations, the federal government decided to pull rank on parents and physicians. With the institution of the Baby Doe Hotline, the executive branch claimed the superior authority in such cases and deputized others, in the health care industry and otherwise, to report such actions that they believed would to be discriminatory against an impaired child. Thus, the battle begins. Politicians and lawmakers quickly interjected their ethical beliefs upon the physicians, who are licensed to make medical recommendations based upon their expertise, and the parents, who will ultimately take the child home and spend the next 20-some years raising him or her. How involved should government be is such situations? Consider how much effort these politicians will expend in raising the impaired child. It is easy to make laws governing a child’s life when there is no further involvement in raising the child. Additionally, those children with extreme impairments, one’s that cause extensive and prolonged suffering for the child, are now forced, by federal law, to potentially endure a fate that might well be considered worse than death.

Then what criteria should exist when making the decision to allow an impaired infant to die. Although Down syndrome may not constitute the suffering that some would associate with a humane act of mercy, what about those children born with spinal bifida (an exposed spinal chord), hydrocephaly (water on the brain) and/or anencephaly (the absence of a brain)? Do conditions that cause severe physical and emotional suffering for a child, as well as a parent, justify the withholding of treatment?

So where is the line drawn, if it’s the parents decision alone, then cases like Baby Owens, whose mother insisted, "Get rid of it, I don’t want a mongoloid child" , will open the door for the deaths of children born with a six toe or other minor abnormality. If politicians are permitted to make such decisions, then laws that protect children with an excellent chance of a relatively normal life will also prolong the suffering of children born with extremely painful disorders with no chance of recovery. The debate continues with no final resolution in sight.

VIDEO: Lengthy and comprehensive presentation on “Ethics of Futile Life-Sustaining Treatment”  by Dr. James Hynds  50 minutes  University of California Television (UCTV)

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WHO SHALL SURVIVE?

THE CASES:

Baby K: an Anencephalic Infant and a Mother's request

Baby Owens: Down Syndrome and Duodenal Atresia

Severe Abnormalities

How to describe what occurred?

What are the most important issues?

Who decides who lives and who dies?

Who decides who is ,"Fit" to live?

Based upon what criteria for "fitness"?

Why do they get to decide?

Who speaks for the severely deformed newborns ? The impaired neonates?

Should they be given all possible treatments?

Should nothing be done and leave them to die?

Should they be killed quickly?

Who decides? Based upon what criteria?

Genetic and Congenital Impairments:

• Down Syndrome
• Spina Bifida
• Hydrocephaly
• Anencephaly
• Atresia
• Extreme prematurity

Other Severe Abnormalities

Testing for Impairments

• Amniocentesis 12-14 weeks
• Chorionic Villus Sampling CVS 6-10 weeks
• Genetic Screening
• Blood Screening

Counseling

Description of Trisomy 21- Down Syndrome-"mongolism"

• Mental impairment or alternative functioning
• Physical abnormalities or differences
• Obstructions- deodenal or esophageal atresia

CURRENT LAW:

From the Reagan Administration:  the Federal Emergency Medical Treatment and Active Labor Act (1986)

All institutions receiving federal funds (Medicare/Medicaid/other) must review those cases where there is DISAGREEMENT between the parent and the doctor. An „Ethics Committee" will review. The committee consists of doctors, hospital administrator, ethician or theologian and community representative. The committee reviews the condition of the child. It does not consider the Quality of Life. All that is to be considered is whether or not there are life threatening conditions all of which could be alleviated. If the case is such that all of such conditions can be removed then the committee is to order the procedures carried out. If not all such conditions can be alleviated, then it need not order any to be done. If there is NO DISAGREEMENT, then the case is not referred to the committee and WHATEVER is agreed to by the parent and the physicians will be done. Thus neonates are left without food or water to die by severe dehydration or malnutrition.

Prejudice of the decision makers

those who are well or not impaired

those who have been raised with negative feelings towards the „different"

NAZI Germany

The FINAL SOLUTION: eliminate threats to physical well being, the genetic pool, the economic fortune

First with the malformed or defective neonates, then the defective children and adults, then the mentally ill, then to those not physically or mentally ill !

ISSUES:

Who decides? Who decides for those who can not decide for themselves?

Does Society have the right to intervene in the relationship of a parent to a child, of a Mother towards her Fetus? Neonate? Infant? Child?

If so, based upon what? To what extent? Who becomes responsible for the child?

Control over the evolutionary process:

Based upon what criteria? Aesthetics? Physical Appearances?

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ETHICAL TRADITIONS:

A question of care: Ordinary versus Special Care versus being Allowed to Die

A question of personhood: Are neonates persons? Are severely impaired neonates persons?

Utilitarian: consider the costs (consequences) both economic and social

Kantian: if the neonate is a person then that person deserved respect and while it may be acceptable to refuse treatment it would not be acceptable to deliberately kill the infant. If the infant is NOT a person, lacking in the ability to reason there would be grounds to allow the neonate to die. There may even be a duty to do so.

Singer advocates the killing of certain newborn infants at the discretion of their parents. The criteria he proposes for deciding which infants may be killed center on a wide range of hereditary physical conditions which Singer considers "disabilities".

Ross: similar to Kant

Rawls: similar to Kant

Natural Law: the neonate is a person and entitled to ordinary care to treat the curable life threatening conditions. There are no grounds to withhold all care and no justification for killing a child, infant, or neonate.

Atheistic Natural Law: For the incurable and life threatened neonate there may be a withholding of treatment and a hastening of death.

Theistic Natural Law: the neonate is a person and entitled to ordinary care to treat the curable life threatening conditions. There are no grounds to withhold all care and no justification for killing a child, infant, or neonate.