According to The March of Dimes Global Report on Birth Defects, every year an estimated 8 million children – 6% of total births worldwide – are born with a serious handicap. Of these 8 million children, at least 3.3 million children younger than 5 years of age die annually because of their handicap condition (CITE). Those children who do end up surviving will most likely be mentally and/or physically disabled for the rest of their life.
With at least two handicapped newborns being born everyday, the healthcare industry is constantly faced with decisions regarding what the correct ethical treatment options should be for handicapped newborns. Whether or not treatment regimens should even be administered to handicapped newborns has caused a great deal of controversy in our society, and has ultimately come down to two different options: Should there be a law that makes it illegal to withhold treatment from handicapped newborns? Or should the decision of treatment be up to the parents and/or physicians? Since the number of handicapped newborns being born into the United States is only going to increase, this is definitely an ethical topic that needs to be addressed by both the public and lawmakers.
Withholding treatment from handicapped newborns has been an ongoing issue since 1973, when the first phase of this ethical controversy occurred. Dr. Raymond Duff and Dr. Ian Campbell, physicians in the newborn intensive care unit at Yale-New Haven Hospital, decided to let the public in on a little secret of theirs. In an article they published in the New England Journal of Medicine, they discussed the fact that they and their medical colleagues purposefully withheld life-saving treatment from some fatally ill infants. The publication of this article caused a great amount of controversy because physicians were now not only forcing public knowledge, but also demanding public approval for practices that had previously occurred only behind closed clinical doors (CITE).
The second phase of this controversial issue occurred during the succeeding decade after the 1973 revolution. It was during this time, that the Supreme Court was also trying to legalize abortions. This caused even more right-to-life advocates to speak out against the issue of withholding treatment from seriously impaired newborns. Three well-known court cases also occurred during this time period that caused the courts to speak against this ethical issue of withholding treatment. The three critical court cases were as follows:
1. 1977 Phillip Becker Case: California Supreme Court ruling that the parents of a child with Down’s syndrome had a right to refuse life-prolonging heart surgery (CITE).
2. 1982 Baby Doe Case: Indiana Supreme Court decision refusing to overturn parents’ refusal to consent to surgery to correct an esophageal atresia of a newborn infant with Down’s syndrome that lead to his death by starvation (CITE).
3. 1983 Baby Jane Doe Case: New York appellate-level state court and a federal district court ruled that parents had the right to refuse life-prolonging surgery for their infant afflicted with spina bifida (CITE).
All three of these court decisions either lead to the death of a newborn or caused a lifelong handicap. Had there have been a law that required medical treatment; all three of these surgeries could have been performed with a high chance of success in prolonging the children’s lives.
This then brings us to our third and final phase – the current phase of the controversy. In 1984, Congress responded to the above court of appeals ruling by passing the Child Abuse Amendment Act. This statute requires that all states themselves create investigative mechanisms that will build upon the same agencies that already exist in every state. The goal of this Amendment was to protect children against abuse or neglect and to ensure that all newborns receive medical treatment – unless they are inevitably dying or are irreversibly comatose – regardless of their parents’ or physicians’ wishes to the contrary (CITE). The law officially went into effect on June 1, 1985, with high-hopes of solving this medical controversy. Although it did solve many controversial problems, many people argued that it “was limiting the clinician’s discretion and parents’ ability to act in the best interest of the infants in deciding whether they should receive comforts care or aggressive life-saving treatments.”(CITE) Due to this popular argument, the law was only in place for a few years before it was overturned in Federal Court.
With the Child Abuse Amendment Act no longer in place, we are once again left asking ourselves the controversial options of: Should there be a law that makes it illegal to withhold treatment from handicapped newborns? Or should the decision of treatment be up to the parents and/or physicians? An important feature of past cases that we must consider deals with the haphazard and often-arbitrary nature of these types of practices. Due to the variations in hospitals, parents, and doctors, no single case can be treated the same as the next. In most current cases, because of these variations, hospitals are unable to have written rules or guidelines for dealing with these issues. All of these “variations” are what makes these ethical decisions so difficult for our healthcare providers.
If a law were to be put in place that made withholding treatment from newborns illegal, there are many positive and negative issues that would have to be considered in order for the action to be considered ethically correct.
• Infant’s “Net Benefit.” A severely impaired infant could be so incapacitated that required treatment by law may not be in the best interest of the infant’s survival. If survival does exist, both the infant and family could have to deal with the condition the rest of their life.
• Rights of parents over their children are not absolute. When parental conduct threatens a child’s well being in a significant way, the interests of the state law and the individual child can override the parent’s decision.
• Religious Views. The right to practice religion freely does not include the liberty to expose a child to ill health or death. Having a law could override this parental decision.
• Rejection of the handicapped. Parental bias against or dislike of the physically and mentally handicapped is unacceptable. Although care of the handicapped does present substantial burdens to parents, family, and taxpayers, this should not be a reason for withholding treatment. As seen in previous cases, having a set law can override these unethical decisions.
• Inflict suffering on too many people. Having a handicapped newborn can often time inflict a huge amount of suffering on people – newborn, family, friends, etc. One must also worry about if others (family, friends, doctors) can be relied upon for support and assistance. A law would not only require parents to put up with the lifelong sufferings but also stress about the correct support and assistance.
• Increases in technology. With the large increases in technology, the amount of care that can now be offered to handicapped newborns is better than ever before. Many treatments that could not be offered previously now have the capabilities of saving many newborn’s lives.
Having a law would not only have an effect on the above issues, but would also make sure that every newborn receives equal treatment. Following live birth, the traditional law presumes that personhood exists and that each infant is entitled to the usual legal protections, whatever the specific physical and mental characteristics may be (CITE).
If there is not a law requiring treatment, the decision is ultimately left up to the parents and/or physicians – which could be a good or bad decision.
• “Family Privacy.” Parents have a constitutional right of “family privacy” to decide for or against treatment of impaired infants. “The child is nobody’s business but their own.” Therefore, this is a private act that should have no public or law significance (CITE).
• “Freedom of Choice.” Parents can choose to accept this child into their family. Having made this choice, the parents are obliged to bear the consequences of this choice in private. They can look to no one but themselves and their own resources to support the specially demanding needs of this child.
• “Natural Rights of Parents.” Decisions concerning the child’s education, lifestyle, medical care, and well-being should be the parents, not lawmakers, responsibility.
• Sympathy for the parents. As members of society, we must understand the parents’ feelings of never being able to cope with the financial, physical, and psychological stresses of caring for such a child at home. If this is the case, withholding treatment may be the best option.
• Lifestyle Available. Only the parents and/or physicians know if they can financially and emotionally support the newborn. They are also the only ones that know the level of poverty and social environment the newborn will be faced with. In some cases, making the decision to withhold treatment may be a better option for the newborn.
• Death. In some cases, death not treatment may be the best care that can be offered to the suffering newborn.
• Criminal Prosecution for Nontreatment. Although the decision of withholding treatment would be left to the parents, doctors, and nurses, they all must realize that if treatment is withheld, they could be prosecuted for homicide, child abuse, and/or manslaughter.
There is a growing consensus that Nontreatment can be substantively justified in many circumstances – like the ones seen above. Giving the parents and/or physicians ultimate authority over the decision of withholding treatment seems like the most appropriate outcome. Parents should be able to refuse necessary medical care for a child who has no “opportunity for either a life worth living or a life of relatively normal healthy growth (CITE).” As far as where I stand on this controversial issue, I would have to say that I would consider myself to be in the “middle grounds.” I believe that the following quote describes my stance on the issue very well: “The burdens of decision making must be borne by families and their professional advisers because they are most familiar with the respective situations. Since families primarily must live with and are most affected by the decision, it therefore appears that society and the health professions should provide only general guidelines for decision making. Moreover, since variations between situations are so great and the situations themselves are so complex, it should follow that much latitude in decision making should be expected and tolerated (CITE).”
I believe that whether or not treatment should be given to handicapped newborns should be the parent/physician’s decision. They ultimately are the ones who know what is in the “best interest” for the infant. Only the physician and parents - not lawmakers - know the level of the treatment’s success and the type of environment (social, emotional, financial, etc.) the infant would be brought up in.
However, I also think that there should still be a law against withholding treatment from handicapped newborns, especially since it is something that still goes on behind closed doors. The parent/physician’s should still be able to decide whether or not the treatment should be given to the infant. However, if it is obvious that the parent is refusing treatment - that has a high level of success - for the sole reason that their child has a mental retardation issue, then the law should step in.
Although there is really no good solution for this controversial issue, there is nonetheless a least worse solution. There is no one solution that will neatly solve all of the problems without creating other problems in our society.