Case: Baby K– Futile Treatment
Baby K is an infant female born with anencephaly. Permanently unconscious, she has only brain stem function. Ventilator treatment was provided upon birth and for an unstated period. The hospital sought to transfer the patient, but did not find a willing hospital. She was transferred to a nursing home (with the condition that the hospital would accept her back upon respiratory distress). At the time of the hearing in trial court, two episodes of respiratory distress had occurred, and ventilator treatment had been provided at the hospital.
Her condition had been diagnosed prenatally, but her unmarried mother refused an abortion, even though this was recommended by her obstetrician and her neonatologist.
During the initial hospital stay, hospital personnel "urged" the mother to permit a DNR order because: 1) no treatment existed for her condition, 2) no therapeutic or palliative purpose was served by ventilator treatment, and 3) ventilator care was medically unnecessary and inappropriate. The mother, however, insisted on the use of the ventilator.
The biological father [so-declared by a Virginia state court] was "only distantly involved," and was not initially consulted on the issue by the mother or the hospital.
The physicians requested ethics committee assistance, a subcommittee of which [composed of a family practitioner, a psychiatrist, and a minister] concluded that ventilator treatment should end and that "such care is futile," and recommended pursuit of legal action "if the family refused to follow that advice." The mother rejected the committee's recommendation.
Following the two additional hospital stays for temporary ventilator treatment of respiratory distress, the hospital initiated a declaratory and injunctive proceeding, requesting declaration of hospital obligations under 1) the Emergency Medical Treatment and Active Labor Act (EMTALA), 2) the Rehabilitation Act of 1973 [as to discrimination against handicapped], 3) the Americans with Disabilities Act of 1990 (ADA) [as to discrimination against disabled by "public accommodation"], 4) the Child Abuse Amendments of 1984 [which authorizes a state to bring an action to present medical neglect of disabled infants, and 5) the Virginia medical malpractice laws.
The court-appointed guardian ad litem supported the hospital's position on withholding future ventilator treatment, as did the father.
The mother stated her personal belief that all human life has value, her Christian faith that all life should be protected, and her personal belief that only God should decide the moment of the baby's death. The hospital stipulated that neither lack of medical resources nor inability to pay for the services were reasons for its proposal for withholding future ventilator treatment.
Refusing to authorize withholding of future ventilator care, the United States District Court ruled that:
"the nebulous liberty interest in refusing life-saving treatment." The court also stated that the asserted right to treatment could only be overcome by clear and convincing evidence that treatment was so unreasonably harmful as to constitute child abuse or neglect, ruling that such was not present.
The Court of Appeals affirmed (stating that, by then, three hospital readmissions had occurred). The Court ruled that EMTALA imposed absolute treatment duty (distinguished from screening duty), requiring treatment to stabilize the infant's condition. It ruled that Act allowed no exception as to treatment care that givers deemed "medically and ethically inappropriate."
In October, the U.S. Supreme Court refused to hear the case "without comment."
Article: Court Lines - The Case of Baby "K": The Concerns of Bioethics vs. The Concerns of Law
By Vicki Michel, MA, JD
Ethical Currents, June 1994
Michel is Associate Director of the Pacific Center for Health Policy and Ethics, USC, Los Angeles.
On February 10, 1994, the Fourth Circuit U.S. Court of Appeals, upholding the earlier district court decision, held that a Virginia hospital must continue to provide life-sustaining treatment for an infant with anencephaly. Many bioethicists vehemently criticized the decision, describing it as "so befuddled, so completely wrongheaded…"1 or as a "reversal of what I take to be moral and legal progress...".2 This case, like the Wanglie case before it, demonstrates the importance of how an issue is defined and framed. Lt also illustrates how healthcare professionals and bioethicists misunderstand judicial decision making.
Baby K. was diagnosed in utero with anencephaly. Ms. H, Baby K's mother, was counseled by her physician to terminate the pregnancy but declined to do so. Baby K was given ventilator support at birth and Ms. H insisted upon continued aggressive treatment for her baby. Neither the attending physicians nor the hospital ethics committee, all of whom believed continued treatment was futile given their view that anencephaly is incompatible with life, was able to dissuade her. The ethics committee recommended that, if Mrs. H couldn’t be, convinced to terminate treatment of Baby K, the hospital should attempt to resolve this through our legal system."3 Ms. H was not convinced, but the hospital chose to transfer the
infant to a nursing home, agreeing to accept Baby K back if she developed respiratory distress (ventilator treatment was not available in the nursing home). After several transfers, the hospital filed suit, asking the court to say that the hospital would not be in violation of four federal laws – the Emergency Medical Treatment and Active Labor Act (EMTALA), the Rehabilitation Act of 1973 (Rehab Act), the Americans with Disabilities Act (ADA), and the Child Abuse Act – if it refused to give Baby K life sustaining medical care. In order to decide the case, the court had to determine whether any of these federal laws applied and, if they did, whether refusing to treat Baby K violated any of them. The district court based its decision on the first three statutes, but the Court of Appeals relied only on EMTALA.
Those in bioethics largely frame this case by asking whether physicians have an obligation to treat in a situation in which they believe treatment is utterly pointless. What is important to understand is that the legal analysis necessary to decide this case never had to frame the issue in that way.
EMTALA is a law that was passed to prevent hospitals from dumping poor patients without insurance who are acutely in need of care. EMTALA requires that a hospital provide stabilizing treatment to anyone who comes to an emergency room in an "emergency medical condition," which is defined as "acute symptoms of sufficient severity… such that the absence of immediate medical attention could reasonably be expected to result in… serious impairment… or serious dysfunction…” “Stabilizing treatment” is treatment necessary to assure “that no material deterioration of the condition will result.”
When Baby K was returned to the hospital, she was in an emergency condition and needed ventilator support to be stabilized. The hospital's attorney did not deny this contention. Rather, the hospital argued for an exemption from EMTALA when treatment is "futile” or "inhumane" as judged by the hospital physicians. The district court relied on a very basic rule of statutory construction in considering this: when the plain language of a statute is clear, there is no legal basis to go beyond it.
However, one can argue that following the plain language, in a particular instance leads to art absurd result or a result that is inconsistent with the statute's purpose. Judge Sprouse, the one judge who dissented from the court of appeals decision made this argument. He said he did not believe that Congress intended when enacting EMTALA, for the courts to supervise decision making in the circumstances of Baby K. The statute, he argued, was directed at patient dumping and disparate treatment between emergency patients, neither of which were at issue in this case. Judge Sprouse accepted the hospital's argument that the relevant condition for analysis under EMTALA was Baby K's anencephaly, not her respiratory distress, and that the hospital must provide only the same treatment to all anencephalic infants, which would, of course, be comfort care only. Judge Sprouse's argument, especially with regard to Congress’s intent when enacting EMTALA, seems quite compelling, but it did not prevail.
The hospital also argued that Virginia law explicitly allows physicians to withhold care from a patient that the “physician determines to be medially or ethically inappropriate.”4 This Virginia statute is unique in legislating a physician-determined definition of futile treatment. However, as the court points out, it is settled law that, when a state statute conflicts with a federal statute, state law is preempted, and federal law prevails. The Virginia statute is worthy of substantiate discussion, but that discussion is not relevant to the Baby K decision.
As noted above, the 4th Circuit Court of Appeals relied on EMTALA alone to decide this case, but that was possible only because the case factually involved a transfer from a nursing home to a hospital. Most cases involving the duty to provide so-called “inappropriate” treatment will not involve such a transfer, so it is important to look at the other federal statutes invoked in the District Court opinion.
Rehabilitation Act of 1973
Section 504 of the Rehab Act prohibits discrimination against an “otherwise qualified” handicapped person solely on the basis of the person’s handicap. The law applies to any program receiving federal money and hospitals that accept Medicare and Medicaid funding are subject to it. This statute was intended to prevent employment discrimination where “otherwise qualified” meant the person was capable of doing the job requirements that accounted for rejecting the person.
The “otherwise qualified” concept does not fit well when talking about medical treatment. If Baby K’s handicap is anencephaly, then it is certainly the case that the hospital wanted to deny treatment because of her handicap. But that very handicap is what causes the need for her treatment, unlike the employment situation in which the job application and the handicap are unrelated.
However, the court says that because a baby without anencephaly would be treated for respiratory distress, Baby K would have to be treated for respiratory distress under the Rehab Act. The hospital based its argument in part on two prior cases in which hospitals were not required under the Rehab Act to override parental refusal of treatment for infants with disabilities. The court says that those cases are not relevant to the Baby K case because there the parents consented to withholding treatment. This suggests that discrimination against handicapped infants is not illegal if the parents agree to it. It’s not clear what the court is saying here, but it may be suggesting that parents have a broader range of treatment choices for their children than institutions do.
Americans with Disabilities Act
The ADA prohibits discrimination against persons with disabilities by entities defined as “public accommodations.” A disability is defined as “a physical or mental impairment that substantially limits one or more of the major life activities,” of an individual.5 Anencephaly is a disability and a hospital is a public accommodation under the ADA. Thus, the hospital’s request to deny treatment to Baby K because she has anencephaly falls squarely under the prohibition of the ADA according to the district court. The court’s opinion says “the Hospital’s reasoning would lead to the denial of medical services to anencephalic babies as a class of disabled individuals. Such discrimination against a vulnerable population class is exactly what the Americans with Disabilities Act was enacted to prohibit.”6
It is this reasoning that could have a major impact on future medical treatment decisions. It would seem to prohibit withholding life-sustaining treatment from a patient with PVS, if PVS is considered to be within the ADA’s definition of disability; and it certainly seems to be within the language of the statute. Almost any condition that provokes discussion of the inappropriateness or “futility” of treatment is likely to be within the definition of disability as it now stands.
Thus the framework for legal analysis starts in a very different place than the analysis used in bioethics. The debate between expert witnesses in the Baby K case (John Fletcher for the hospital, and Robert Veatch for the mother) is about who gets to decide when treatment is inappropriate: the physicians or the patient/surrogate. Or, as Fletcher put it, “the dispute, which is complex, is about the moral weight of parental autonomy and religious liberty when conflicting with physicians’ recommendations based on standard of care.”7
But, that was not the issue for either the district court or the Fourth Circuit Court of Appeals. The latter puts it this way: “It is beyond the limits of our judicial function to address the moral or ethical propriety of providing emergency stabilizing medical treatment to anencephalic infants. We are bound to interpret federal statutes in accordance with their plain language and any expressed congressional intent.”8
Where do we go from here? Will there be a U.S. Supreme Court decision on this in the future? Should court decisions determine or influence the way we carry on the conversation about difficult bioethics issues? This question seems particularly relevant at a time when many ethics committees are trying to develop policies on “futile” or “inappropriate treatment.” Such policies generally attempt to describe those circumstances in which treatment need not be offered to a patient/surrogate. But if the circumstances described refer to conditions of the patient that fall within the legal definition of disability, the policy will be vulnerable to attack under the ADA.
Although the only court so far to use the ADA this way is the trial court in Baby K, the analysis will surely be repeated. However, this should not be a reason to cut off prematurely an important ethical controversy. If health professionals and those in related fields came to a national consensus that, for example, it was ethically inappropriate to continue providing life-sustaining treatment to permanently unconscious patients, and if courts turned out generally to take the position that forgoing such treatment violated the ADA, there would then be a need to resolve the conflict between the law and the ethics of the issue. For the time being, however, we should continue the conversation, noting that the availability of the ADA as a challenge to decisions to withhold treatment requires us to think carefully about disability as a factor in those decisions.
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Director: John Glaser, STD Editor: Judith Wilson Ross, MA Contributing Editor: Vicki Michel, MA, JD
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C1994 Center for Healthcare Ethics, St. Joseph Health System
BABY K: Discussion Questions
See Volume41, 1994. Journal of the American Geriatrics Society.
Cranford, Ronald E. 1994. "Medical Futility: Transforming a Clinical Concept Into Legal and Social Policies." Journal of the American Geriatrics Society 42:894-898.
Grant, Edward R. 1992. "Medical Futility: Legal and Ethical Aspects." Law, Medicine and Health Care 20: 330-335.