Baby K was born on October 13, 1992, with anencephaly, a condition involving absence of the cerebral and cerebellar portions of the brain, for which there is no curative or ameliorative treatment. Baby K was permanently unconscious, could not hear or see, and apparently could not feel pain, but did have sucking, swallowing and coughing reflexes (consistent with the condition of anencephaly). She had difficulty breathing at birth and was placed on a ventilator. Hospital personnel encouraged Ms. H, Baby K’s mother, to enter a DNR order and to discontinue ventilator treatment for Baby K. Ms. H refused to permit either. Baby K was eventually weaned from the ventilator and transferred to a nursing home, where she had several subsequent episodes of respiratory distress requiring rehospitalization and a tracheotomy. Ms. H continued to seek aggressive care for Baby K. The hospital filed suit in federal district court seeking a declaratory ruling and injunctive relief to the effect that its future refusal to provide Baby K with life-sustaining medical care (primarily the ventilator), would not violate the following laws: The Emergency Medical Treatment and Active Labor Act (EMTALA), the Rehabilitation Act of 1973 (the "Rehab Act"), the Americans with Disabilities Act (ADA), and the Child Abuse Amendments of 1984, and the Virginia Medicine Malpractice Act.
The court denied the hospital the relief it sought under EMTALA, the ADA and the Rehabilitation Act, and declined, for technical legal reasons, to make a ruling under the Child Abuse Amendments or the Malpractice Act. As to EMTALA, the court refused to recognize an exception to EMTALA’s plain requirement that a hospital provide stabilizing emergency medical treatment for an emergency medical condition based upon the hospital’s assertion that such stabilizing treatment is futile or "inhumane." The court noted that even if such an exception were available in the language of EMTALA, it would not apply in Baby K’s case because the use of a ventilator is not futile or inhumane in relieving Baby K’s acute respiratory distress, which is the condition for which she sought emergency medical treatment. The court also argued that withholding the ventilator from Baby K would violate both the Rehabilitation Act and the ADA. The hospital had admitted that the sole reason that it wanted to withhold the ventilator was because of Baby K’s "handicapping condition," her anencephaly. The language of these two statutes does not permit denial of ventilator services to a disabled child when those services would be given to other, non-disabled children.
Because of the nature of legal relief sought by the hospital in this case, the court was not asked to address directly the issues of whether or not ventilator care was "futile" for Baby K, or whether or not the hospital or treating physicians had the authority to stop providing care that they had determined was futile. Instead, the case supports the proposition that heath care providers who assume authority to discontinue treatment that they feel is futile when the patient or the patient’s surrogate desires such treatment, may face liability under EMTALA, the ADA and the Rehabilitation Act if the patient is in an emergency medical condition or is disabled. [Source: In the Matter of Baby K, 832 F.supp. 1022, E.D. Va. 1993.]
Principles & Concepts: human dignity, right to life, personhood, right to health care, professional & institutional integrity, proportionate/ disproportionate means, principles of integrity and totality, best interests.