The psychological impact of disability and illness on medical treatment decisionmaking.

• Author: Evans, Daryl

The Psychological Impact of Disability and Illness on Medical Treatment Decisionmaking

As the world goes through remarkably rapid technological and demographic changes against a backdrop of increasingly scarce material resources, the issue of how life and death decisions are made about persons with disabilities takes on added relevance. With health care rationing more discernible in many settings, laws designed to protect the rights of citizens with disabilities - some of whom require great material and technological resources to survive - may be all that stands between the provision of medical care for these persons and a reemergence of some of the more untoward aspects of the eugenics movement. One of the most important laws pertaining to the relative place certain disabled persons will have in what may be called "the hierarchy of expendability" is the Child Abuse Amendments of 1984, or, as these amendments are sometimes called, the "Baby Doe Amendments."(1)

This article will explore the psychosocial impact of disability on treatment/nontreatment decisions about "Baby Does" made by physicians and nurses who are known to have extensive experience in such decisionmaking, as well as the role of parents of children with spina bifida cystica who have made such decisions. Before discussing the study that provided the data base for this article, it will be helpful to explore briefly the legal antecedents of the "Baby Doe Amendments," the amendments themselves, and some of the social and legal controversies that have surrounded these amendments.

Infanticide has occurred in all periods of human history.(2) In light of the massive resources of our society and a presumption that the Bill of Rights of the U.S. Constitution protects any citizen's life, the traditional sense was that even if infanticide happened in "more primitive societies," it couldn't happen here. Despite the view that infanticide can't happen here, a peripheral familiarity with the medical advances of the first two-thirds of the twentieth century increasingly left citizens with an intuitive, if not anecdotal, sense that there were some babies with life-threatening conditions who could be saved, but who were not receiving treatment because of their projected life prospects. Indeed, at some level, we probably all knew that gross physical and/or mental deficits were being used to substantiate the act of "letting the children go." Such decisions tacitly raised the issue of a breach of the child's civil rights, but the issue remained a silent one because there is historically established deference to parental privacy in these matters, because the topic is distasteful, and because many citizens were un-aware of the remarkable extent to which technological developments were permitting doctors "to play God" in the nursery. It was a classic case of society's technological capacities outstripping the citizenry's moral and practical abilities to accommodate humanely to the resulting ethical conundra - a phenomenon the sociologist William Ogburn called "cultural lag."(3)

By 1973 the issue of infanticide came to the forefront of the medical literature when Raymond S. Duff and A.G.S. Campbell published their findings regarding the withholding of treatment from infants in a special care nursery at Yale-New Haven Hospital. The study showed that withdrawal or withholding of treatment resulted in the deaths of forty-three infants, accounting for 14% of the deaths in that nursery during the period of study.(4) By 1977 Shaw had published a survey of pediatric surgeons and pediatricians illustrating that there was widespread acceptance of the practice of withholding treatment from certain disabled children.(5)

By 1982, the issue of withholding treatment from children with disabilities entered a litigious phase. On April 9, 1982, a baby known as "Infant Doe" was born with Down syndrome, and an esophageal atresia with associated tracheoesophageal fistula. The latter condition is fatal if not surgically repaired, but Infant Doe's parents would not consent to the operation and the baby died of starvation six days later.(6) In response to Infant Doe's death, President Reagan instructed the Secretary of the Department of Health and Human Services (HHS) to "notify health care providers that section 504 of the Federal Rehabilitation Act of 1973 `forbids recipients of federal funds from withholding from handicapped citizens, any benefits or services that would ordinarily be provided to persons without handicaps.'"(7)

On May 18, 1982, HHS issued a "Notice to Health Care Providers."(8) On March 7, 1983, HHS issued regulations requiring hospitals receiving federal funds to establish a twenty-four hour "Handicapped Infant Hotline" and to post signs in delivery rooms, pediatric wards, nurseries, and neonatal intensive-care units that read: "Discriminatory failure to feed and care for handicapped infants in this facility is prohibited by federal law."(9)

In opposition to the "Baby Doe" regulations, the American Academy of Pediatrics brought suit that successfully blocked implementation of the regulations. HHS revised the defeated regulations and issued a new proposal on July 5, 1983. After a period of comment, HHS modified the proposal again and issued a final regulation on January 12, 1984. This time the regulations were challenged successfully in court by both the American Hospital Association and the American Medical Association.(10) It was becoming apparent that requirements to treat infants with life-threatening disorders and disabilities would not be sustained under the section 504 criterion.

The aforementioned court cases would illuminate significant phenomena about the Baby Doe issue - the most salient being that parents and physicians who typically were making treatment/nontreatment judgments were not following consistent criteria in making their decisions. Moreover, the ethical criteria that formed the basis of these decisions were not uniform, nor was there a consensus about who would be the primary decisionmaker. Indeed, there was dissension about what laws applied in these cases.(11)

In view of the circumstances that had been brought to light in the Baby Doe regulations controversy, it became evident to the Congress that there ought to be a national standard regarding medical intervention with disabled newborns. To that end, Congress, via the Child Abuse Amendments of 1984, added a clause to the Child Abuse Prevention and Treatment Act requiring states receiving federal child abuse prevention grants under the act to incorporate procedures and/or programs within the child protective service system to respond to cases of medical neglect. According to the act, this includes the withholding of medically indicated treatment from a disabled infant with a life-threatening condition.(12) The amendment defines" withholding of medically indicated treatment" as:

[T]he failure to respond to the infant's life-threatening conditions

by providing treatment (including appropriate nutrition,

hydration, and medication) which, in the treating physician's

or physicians' reasonable medical judgment, will be most likely

to be effective in a ameliorating or correcting all such conditions,

except that the term does not include the failure to provide

treatment (other than appropriate nutrition, hydration, or

medication) to an infant when, in the treating physician's or

physicians' reasonable medical judgment,

(A) the infant is chronically and irreversibly comatose;

(B) the provision of such treatment would: (i) merely prolong

dying, (ii) not be effective in ameliorating or correcting all of

the infant's life-threatening conditions, or (iii) otherwise be futile

in terms of the survival of the infant; or

(C) the provision of such treatment would be virtually futile

in terms of the survival of the infant and the treatment itself

under such circumstances would be inhumane.(13)

Under the amendment, when an infant's life is at stake, the infant's interests must take priority over parental wishes. However, if it is decided that treatment is medically indicated, the physician must seek parental consent. If that consent is not forthcoming, the physician must report the case to the appropriate state agency or face charges of medical neglect. The state agency then must investigate the case and, where appropriate, seek court action. Hence, although parents still are involved in the decision-making process, they are not the final decisionmakers if there is a challenge to the decision.

This article attempts to explore the psychosocial backdrop against which the law is being implemented. This exploration is designed to illustrate the manner in which particular cohorts adopt "psychosocial mind-sets" by virtue of the structural conditions of their existence, which lead these cohorts to embrace typified attitudes towards certain disabled children and the laws designed to protect them.

The Study

Spina Bifida

The inquiry that forms the empirical basis of this article concerns itself primarily with a disorder called spina bifida cystica. Spina bifida cystica is a condition in which the spine of a newborn typically is exposed to the environment through a hole in the child's back. Because the spine usually is neurologically dysfunctional below the point where the lesion on the back occurs, most children with spina bifida have major problems with ambulation and bowel and bladder control. Further, in approximately 70% of the cases, the children are born with or develop hydrocephalus, an abnormal build-up of cerebrospinal fluid on the brain which contributes to approximately one-third of these children being mentally retarded. Many of those without hydrocephalus have learning disorders.(14) Although aggregate statistics on the incidence of mental retardation exist, physicians typically cannot predict the likelihood of a particular child being or becoming mentally retarded. Other major complications...