Futile Care and the Neonate

Tricia L. Romesberg, BSN, CNNP


Adv Neonatal Care. 2003;3(5) 

In This Article

In The Matter of Baby K

The Baby K case illustrates the legal ramifications of futile care. On October 13, 1992, Baby K was born at Fairfax Hospital in Washington, DC. The diagnosis of anencephaly was made prenatally. Anencephaly results from failure of the neural tube to fuse, resulting in minimal development of brain tissue and absence of the skull bones.[12] It is an untreatable condition, and infants typically survive only a few weeks with palliative care.[13] Despite medical advice, the mother carried Baby K to term.[14]

At her mother's insistence, Baby K was intubated and placed on mechanical ventilation at birth.[15] In conjunction with an ethics committee, the physicians recommended a do not resuscitate order.[16] Her mother rejected the recommendation, and the infant eventually was weaned off of the ventilator.

Differences of opinion regarding appropriate treatment led Fairfax Hospital to find another hospital to accept the transfer of Baby K. All hospitals in the area with pediatric intensive care units declined, and she ultimately was transferred to a nursing home at 6 weeks of age. The mother agreed to this transfer under the condition that the hospital would readmit the infant if needed.[15] In the following months, Baby K was readmitted several times for respiratory distress and apnea.

At 6 months of age, she was readmitted to the hospital for the third time, and a tracheostomy was performed.[14] At that time, the hospital filed a motion in federal court for appointment of a guardian and a declaratory action that the hospital be permitted to provide only palliative care. The appointed guardian agreed that aggressive treatment should be stopped.

The hospital's motion for declaratory judgment to withhold ventilator treatment was based on the belief that such refusal of care would not violate the Emergency Medical Treatment and Labor Act (EMTALA),[18] the Rehabilitation Act of 1973, the Americans with Disabilities Act, the Child Abuse Amendments of 1984, or the Virginia Medical Malpractice Act.[16] The hospital acknowledged that respiratory distress is an emergency condition, but they argued that EMTALA should be interpreted to include exceptions for treatment that qualified physicians deem as futile.[15] The district court disagreed and ruled that the hospital was legally obligated to provide ventilator treatment to Baby K based on EMTALA, the Rehabilitation Act of 1973, and the Americans with Disabilities Act.[17]

The hospital appealed the judge's ruling in the Fourth United States Circuit Court of Appeals.[19] The hospital contended that anencephaly, not respiratory distress, was the emergency medical condition at issue and asserted that any care, other than palliative, was both quantitatively and qualitatively futile, and therefore, they should not be obligated to provide life-sustaining support.

The appeals court judge ruled that the emergency medical condition prompting Baby K's returns to the hospital was respiratory distress, not anencephaly. Although the judge recognized the difficulty of physicians providing care that they believed to be ethically inappropriate, he opined that it was not the job of the courts to ignore the law. He pointed out that EMTALA does not make exceptions for other terminally ill patients when they present to the hospital. For example, patients with lung cancer or muscular dystrophy may also seek emergency care for respiratory distress despite a terminal prognosis. On February 10, 1994, the court ruled that the hospital was not authorized to decline to provide stabilizing treatment, which it considered ethically inappropriate, to this anencephalic infant or to any other patient presenting with an emergency condition.[19]

The father was not involved with Baby K or her mother and did not participate in the controversy; however, when asked his opinion, he agreed with the hospital.[14] The mother, who visited Baby K daily, said that "God, and not other humans, should decide the moment of her daughter's death."[17] She felt that she had "the right to decide what is in her child's best interests."[17]

Baby K spent many months in the pediatric intensive care unit at a minimum cost of $1,450 per day.[15] Nursing home costs were estimated at over $100 per day.[15] All treatment was covered by private insurance and Medicaid. Baby K died in April 1995, of cardiac arrest at 2.5 years of age.[15]


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