For Futher Learning:
References (Citied) Akeson, Nancy, et al. "Neonatal care for premature infants." The Hastings Center Report Jan.-Feb. 2005: 4+. Opposing Viewpoints in Context. Web. 22 Apr. 2014. Bagenstos, Samuel R. "Legalized Assisted Suicide Reflects a Biased View of the Disabled." Assisted Suicide. Ed. Sylvia Engdahl. Detroit: Greenhaven Press, 2009. Current Controversies. Rpt. from "Disability, Life, Death and Choice." Harvard Journal of Law and Gender (Summer 2006). Opposing Viewpoints in Context. Web. 22 Apr. 2014. Holden, Constance. "High Court says no to administration's Baby Doe rules." Science 232 (1986): 1595+. Academic OneFile. Web. 22 Apr. 2014. Hurst, I. "The Legal Landscape At The Threshold Of Viability For Extremely Premature Infants: A Nursing Perspective, Part I." JONA's Healthcare Law, Ethics & Regulation 8.1 (2006): 20-28. CINAHL Plus with Full Text. Web. 22 Apr. 2014. Kopelman, Loretta M. "Are the 21-year-old Baby Doe Rules Misunderstood or Mistaken?" Pediatrics Mar. 2005: 797+. Academic OneFile. Web. 22 Apr. 2014. Robertson, John A. "Extreme prematurity and parental rights after baby Doe: the child abuse amendments of 1984 established the norms for treating disabled newborns, but they did not address the treatment of premature babies. Parents and physicians need a framework for decision making. A decision handed down recently by the Texas Supreme Court is a step forward." The Hastings Center Report July-Aug. 2004: 32+. Academic OneFile. Web. 22 Apr. 2014. “Seriously Ill Children." Death and Dying: End-of-Life Controversies. Sandra M. Alters. 2010 ed. Detroit: Gale, 2010. Information Plus Reference Series. Opposing Viewpoints in Context. Web. 22 Apr. 2014. Uddo, Basile J. "Federal policy on forgoing treatment or care: contradictions or consistency?" Issues in Law & Medicine Winter 1992: 293-308. Academic OneFile. Web. 22 Apr. 2014. https://www.diigo.com/user/shawnaford |
Shawna Ford Research Argument Paper:
Baby Doe Law Baby Doe, best interest’s standard, neonates, quality of life The Baby Doe Law or Baby Doe Amendment is the name of an amendment to the Child Abuse Law passed in 1984 in the United States that sets forth specific criteria and guidelines for the treatment of seriously ill and/or disabled newborns, regardless of the wishes of the parent’s law regarding the health of the unborn or newborn infant (Robertson). The controversy centered on whether parents had the right to make medical choices for children born with life threatening congenital malformations, when those choices either allowed the child to die or did not provide the curative options available. The claim between either parties have debated on who has claim or reasoning to make life or death decision on infants who has serious ill or congenital malformations. When Baby Jane Doe was born at St. Charles Hospital in Port Jefferson, New York, her anomalies were so severe that she was immediately transferred to the State University Hospital at Stony Brook, a hospital with the means to provide corrective surgery (Resnik). The debate has traveled throughout the world and over coming through many hurdles. Through many appeals the federal government gained a law for Baby Doe and other infants born with congenital malformations, which would be in the best interests of neonates, quality of life. The law has many loop holes that’s has created a lot of eye opening facts that doesn’t always apply to certain cases. The Baby Doe Law has been in debate for several years, because each case or child is different due the medical condition at hand. The law keeps doctors from debating if they want to spend the money on a child who may not have a normal or short expand of life. One out of every 33 babies born in the United States each year have birth defects, or life threatening congenital malformations reported by the Centers for Disease Control and Prevention “Birth Defects.” In the research argument on the Baby Doe Law, I can say that the health of the baby or unborn child and the parents’ rights to grant life to a newborn is not always the ultimate decision. [Court Of Appeals] "It may still be objected that to replace either a fetus or a newborn infant is wrong because it suggests to disabled people living today that their lives are less worth living than the lives of people who are not disabled. Yet, it is surely flying in the face of reality to deny that, on average, this is so" (Singer). The Baby Doe case launched many issues from the Department of Health and Human Services to Court of Appeals, United States v. University Hospital of New York at Stony Brook (Bowen). Outrage from the right to life groups, to President Ronald Regan and his close adviser, Surgeon General C. The Baby Doe Law mandates that states receiving federal money for child abuse programs develop procedures to report medical neglect, which the law defines as the withholding of treatment unless a baby is irreversibly comatose or the treatment is "virtually futile" in terms of the newborn's survival (Bowen). Assessments of a child's quality of life are not valid reasons for withholding medical care (Wikipedia). [Weber V. Stony Brook Hospital 1983] The New York Court of Appeals’ 1983 case Weber v. Stony Brook set an important precedent upholding the right of parents to make medical decisions for newborns born with severe congenital defects. In 1983 the Baby Doe law was already being compromised due to the funds given to Stony Brook Hospital to help a child with anomalies. In the court of appeals, Weber V. Stony Brook Hospital the right of parents to make medical decisions has been a long time brewing over the rights to decide what’s in the best interest of the child. The Court of Appeals ultimately ruled not only that Washburn the appointed Attorney had overstepped his authority, but also that the parents’ decision wasn’t medically and legally valid. The Weber case set an important standard for protecting the rights of parents and limiting the rights of government to make medical decisions for infants with severe congenital defects. Justice Melvyn Tanenbaum of the New York Supreme Court acknowledged Washburn’s lack of legal standing and appointed William Weber, another attorney, to be Baby Jane Doe’s guardian and a neutral party in the dispute (Resnik). Once Weber was guardian, Tanenbaum summarily ruled against the parents and ordered the surgery be performed on the grounds that the infant had a state protected right to survive (Resnik). In Weber v. Stony Brook Hospital, the justices found that both Attorney Washburn and Justice Tanenbaum had abused their authority by proceeding with the suit against the parents. Instead, under the Family Court Act, any investigation of suspected neglect must be initiated and carried out by Child Protective Services (Resnik). [Bowen V. American Hospital Association (1986)] The 1986 US Supreme Court decision Bowen v. American Hospital Association rejected the federal government's use of Section 504 of the Rehabilitation Act of 1973 to intervene in a hospital's treatment for neonates born with severe congenital defects. This case set a precedent for the role of government involvement in cases where parents refused consent for care of disabled newborns (Resnik). The American Hospital Association joined by the American Medical Association brought the suit against the US Department of Health and Human Services and its then-director Otis R. Bowen, to have a series of requirements for neonatal care struck down. The Rules mandated that all federally funded hospitals provide maximal treatment to handicapped infants and report any case where parental consent is withheld if medical neglect is suspected. In a 5 to 3 decision, the US Supreme Court ruled that Congress never intended for Section 504 to address an infant's civil rights, and that the clause cannot be invoked without evidence of discrimination (Wikipedia). The HHS issued the Rules in response to the high-profile case of Baby Doe, a baby born with Down syndrome and other severe deformities. In 1982, Baby Doe's situation caught national attention when the parents, with the advice of their physicians, chose not to perform life-saving surgery (Pro-Life). Baby Doe instead received medication to reduce suffering, but received no food or water. Baby Doe died of dehydration several days after birth, but not before the Reagan Administration, pro-life and disability groups, began to draft a federal policy for intervening in such medical cases. In the case of Baby Doe the lack of medical recourse and the lack of attention from the parents shows that the Baby Doe Law in fact didn’t protect the right or mandate care for this infant, for he can’t speak, but in fact died of dehydration. My next point is this: allowing parents to be the sole and final arbiters of whether such a child will receive medical care is fundamentally unfair, first because the child has a right to it and second because the interests of the child and the parents may be opposed: they may want the child dead. Now I think it plain that when fundamental civil rights are violated and existing institutions cannot safeguard those rights, it is the duty of government to protect the victims. It follows that the Reagan administration, in interceding on behalf of children like Baby Doe, has done the right thing. On March 3, 1983 eleven months after Baby Doe's death, the HHS issued its interim set of Baby Doe Rules based on Section 504 of the Rehabilitation Act of 1973 (Akeson). The Act prohibits any program or position that receives federal funding from discriminating against disabled person or child or infant. Section 504 declares in part that,” no qualified handicapped individual…shall, solely by reason of his handicap, be excluded from participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial aid assistance" (Robertson). [Baby Jane Doe Law First Judicial Test] The new revised law faced their first judicial test on October 11, 1983 when Baby Jane Doe was born at University Hospital at Stony Brook in Long Island, New York. The infant suffered from an incomplete development of the spinal cord, an abnormally small head, a buildup of fluid in the cranium, and kidney damage that would cause many hospital treatments and ongoing hospital stays. Even the attending physicians disagreed on treatment, they informed the parents that the child would be severely retarded, possibly paralyzed, and suffer from kidney and bladder infections where the outcome was lending to none survival. The parents decided against corrective surgery, and decided to provide the infant with positive care consisting of antibiotics and dressing of the exposed spinal sac of baby Jane. The appeals court made its decision, the US Justice Department ordered the University Hospital at Stony Brook to turn over the baby’s medical records to HHS investigators (Bowen). Their claim was to show that Stony Brook Hospital was not supporting the parent’s decision on the choice of life. When the hospital refused, the Justice Department sued. On November 17, 1983 the US District Court ruled against the Justice Department, determining that the parent’s decision was reasonable and concerned the long term choice was in the best interest of the child. “What greater pain could mortal have than this: To see their children dead before their eyes?” -Euripides In February 1984, The Second Circuit Court of Appeals upheld the ruling in United States v. University Hospital (1984). In a 2-1 decision, the court determined that Congress had never intended Section 504 to apply to the medical care of disabled newborns. While Baby Jane Doe’s fate was being decided, the government issued its final Baby Doe regulations in January of 1984. Government revisions had done away with the Baby Doe Squads, labeled as intrusive in several court cases (Resnik). In their place HHS administration appointed the local voluntary Infant Care Review Committees (ICRCs), which were more easily integrated into hospital renewal boards. Despite all the changes, the regulations still strongly favored maximum treatment for infants born with deformities. In cases where parents refused to consent to treatment, the ICRCs were to advise the hospital to alert the courts or a child protective agency. Their debate went through the Supreme Court acts. This was called child abandonment or lack of child abuse. On their claim to debate for the right of life, they sent investigator’s out on the behalf of Section 504 of the Rehabilitation Act. The HHS made it clear that these committees were local extensions of their own investigatory teams. [The Relic of Baby Doe and Jane Law] In order to enforce the regulations laid out in the Baby Doe Law, telephone hot lines were set up around the country and the federal government encouraged anonymous reporting of alleged child abuse, specifically, the withholding of medical care to seriously ill newborns (Anna). The hotlines were discontinued, however, as they resulted in the frequent intrusion of federal investigators into hospitals, often without warrant or without finding actual abuse (The Embryo Project Encyclopedia). The Baby Doe controversies stirred up political passions unrelated to disability issues. Many of those supporting government restrictions on the withholding of life-sustaining care and treatment were identified with anti-abortion, "right-to-life" causes (Anna). Medical, civil liberties, and women's groups tended to oppose what they saw as government intrusion on the privacy of parents and the decision making of physicians "Who Shall Survive" (Anna). This policy statement is the focal point of a nationwide Political, legal, medical, and ethical debate which continues to this day (Anna). The Baby Doe controversy became a stand-in for the "pro-life" versus "pro-choice" debate. (Conclusion to Baby Doe Law) As a result I would like to touch base on what the Baby Doe Cases are all about. In 1984 Congress amended our laws to mandate that all infants born in the United States receive medical care. No matter how sick or disabled. All infants are required to receive medical attention no matter what the parent’s wishes are. This is known as the Baby Doe Law. The law came about because there was a baby born with Down syndrome whose parents declined surgery to fix a trachea-esophageal fistula problem that eventually leads to the baby’s death. The law was created to protect the rights of the disabled and children born with lifelong congenital defects. Who should make the life or death decisions for a preemie or and unborn child? If the decision is made against resuscitation or aggressive treatment, should the decision be made on the basis of a probably negative outcome? What is considered negative? Could more tolerance on the part of the parents dramatically increase quality of life for their child if they were allowed to choose life? These ethical dilemmas, without even discussing legal matters, bring a world of complex issues of ethics, personal values, and spiritual needs together. “You matter to the last moment of your life, and we will do all we can to help you not only to die peacefully, but also to live until you die.” -Dame Cicely Saunders If the appropriate education and preparations are made, palliative care-whether expectant or emergent-can is made into reality. Palliative care is defined by the World Health Organization as “...an approach which improves the quality of life of patients and their families facing life-threatening illness, through the prevention, assessment and treatment of pain and other physical, psychosocial and spiritual problems”(Waston). |
For Further Leanring
Knowing what is right or the value of life is not made up from one person but of many. Through futher Learning on the Baby Doe laws and what has trend spired over the years will only be the beginning for some.