Ethical considerations in the life of a child with Down syndrome.

• Author: Pueschel, Siegfried M.

Ethical Considerations in the Life of a Child with Down Syndrome

Ethical concerns have been with mankind since the dawn of civilization, and physicians have faced ethical questions relating to various clinical situations throughout history. In particular, ethical and moral issues have for centuries permeated many aspects of the care and treatment of persons with disabilities.

There were times when individuals with mental retardation were believed to be possessed by evil spirits, when they were viewed as a menace to the progress of the race, a root of social evils, and a burden of civilization. Less often, they received kind treatment, were protected from cruel environments, and were looked upon as human beings with rights. In the beginning of this century, misguided information on the inheritance of mental retardation and the alleged antisocial and criminal conduct of persons with disabilities led to restriction of many of their basic rights. Many states passed laws prohibiting marriage between persons with mental retardation. Furthermore, sterilization and segregation of such individuals were promoted.(1) Also, immigration laws enacted in the United States in the beginning of this century disallowed those "afflicted with idiocy, insanity, imbecility, feeble-mindedness" to enter the United States.(2) This viewpoint was soon challenged by conscientious researchers, and fortunately such eugenic ideas began to fall from favor during the 1930s and 1940s. Tragically, the same ideas that were arousing the most suspicion in the United States were being seized upon most avidly by Nazi Germany. Revulsion toward Nazi persecution and killing of people with disabilities, as well as emerging scientific studies dispelling many myths relating to persons with developmental disabilities, effectively extinguished the early eugenics movement.

In the postwar years and during the 1950s, motivated to secure for their children the rights and opportunities available to other children, parents of children with mental retardation made their voices heard. These developments reached their climax during the early 1960s when President Kennedy addressed the Congress of the United States saying, "We as a Nation have long neglected the mentally ill and the mentally retarded. This neglect must end, if our Nation is to live up to its own standards of compassion and dignity."(3)

Although much progress has been made over the years and society's attitude toward persons with disabilities has changed to some degree, there are still numerous professionals who express negative feelings when discussing the fate of individuals with developmental disabilities.(4) Many of these authors suggest that persons with Down syndrome or other disabilities are usually nonproductive, not meeting the minimal requirements for existence, and that their lives are filled with suffering and frustrations. In addition, the widely publicized Baby Doe case, the consequences of the technical evolution of prenatal diagnosis, advances in intensive neonatal care, and concerns relating to appropriate treatment of children with Down syndrome have brought the discussion of ethics into the limelight.

This article will focus on two main aspects relating to ethical issues in the life of a child with Down syndrome. First, the ethical concerns when a child with Down syndrome is born who has additional congenital anomalies will be discussed. Second, the ethical decisions relating to treatment approaches during the lifetime of a person with Down syndrome will be discussed.

Ethical Decisionmaking for the Newborn with Down Syndrome

A significant ethical problem is facing the medical profession: How should physicians and parents now understand their obligations to care for newborn infants with disabilities in light of present arguments for genetically indicated abortion after amniocentesis? Are the arguments that support abortion after prenatal diagnosis of genetic diseases or chromosome disorders also supporting euthanasia of those infants who are born alive? Fletcher follows this line of thinking and argues that a decision to abort a defective "subhuman" fetus is logically of the same order as a decision to end a "subhuman life in extremis."(5) According to Fletcher, if one performs abortions based on prenatal diagnosis, one also should be active in "ending the suffering of infants born with the same condition."(6) Fletcher goes on to say, "[W]hen a fetus or newborn is seriously handicapped the human harm prevented and the suffering relieved by abortion and euthanasia justify these actions."(7)

That some infants have a right to die was argued by Duff and Campbell.(8) They opened the ethical dilemma of neonatology to public discussion by reporting that forty-three infants at Yale New Haven Hospital died after treatment had been withdrawn. It was concluded that the prospects for a meaningful life were extremely poor or hopeless for these children, many of whom had Down syndrome. These authors suggest that decisions about withholding ordinary treatment should be made between health care workers and parents, using a quality of life framework. The description provided by the authors from Yale New Haven Hospital is illustrative of many cases in which infants have been allowed to die when lifesaving surgery would have been performed if the baby had otherwise been nondisabled.

The withholding of treatment and care from infants with disabilities has also happened in other countries. For example, a well-publicized incident in England involved an infant with Down syndrome born in July 1980.(9) The parents were very distressed because of the baby's "severe handicap." After a discussion with their physician, Dr. Arthur, a note was written into the medical record saying: "[P]arents do not wish baby to survive. Nursing care only." The physician also prescribed a drug to "alleviate distress." The baby died sixty-nine hours later. Dr. Arthur was in due course prosecuted for murder. Soon after the trial began, the charges were withdrawn under the judge's direction, and the prosecution substituted a charge of attempted murder. An impressive array of doctors testified on behalf of Dr. Arthur, indicating that allowing a severely disabled baby to die if the parents wished it was accepted medical practice. Dr. Arthur was eventually acquitted.

The principal case in the United States relates to an infant, later known as Baby Doe, who was born in Bloomington, Indiana, on April 9, 1982.(10) This baby had Down syndrome and esophageal atresia with associated tracheoesophageal fistula. The physician involved told the parents that they had an ethical right to choose surgery to correct this defect or to choose to do nothing. The parents chose to withhold all food and fluid from the baby, thus ensuring that...