Science and Law: Hospital v. Parents of Anencephalic Infant (Baby K): The duty to treat, futility, and what it means to be alive

February 21, 2015

Science and Law

gavel


Hospital v. Parents of anencephalic infant
16 F.3d 590 (4th Circuit Court, 1994)

This case deals with several highly controversial issues, including the duty of a hospital to treat all patients that enter the emergency room regardless of futility, the responsibilities of hospitals before attempting to transfer a patient to another facility, and the very definition of human existence.

Case Background

  • The infant, known as Baby K, was born in 1992 with anencephaly, meaning that a large portion of her brain never formed.
  • The baby still has a functioning spine and brain stem, meaning that the heart and other organs will still function, and certain spinally mediated responses will occur, such as quickly withdrawing one’s hand from a hot stove, despite the fact that Baby K cannot feel pain.
  • Baby K is permanently unconscious, and does not think or feel, since the parts of the brain such as the cortex and cerebrum responsible for sensory (sight, hearing, touch, etc.) and cognitive functions are absent.
  • Doctors explained to the mother (referred to from now on as Ms. H) that anencephalic babies usually die within a few days of birth because of breathing complications, and because treatment would in no way provide therapeutic benefit to the infant, they recommended that the hospital simply provide Baby K with nutrition, hydration and warmth.
  • Ms. H, based on a strong Christian conviction that all life should be protected, demanded that the hospital continue any and all measures to restore the baby’s breathing when Baby K encountered difficulty.
  • The hospital attempted to transfer Baby K to a different facility, but no other hospital in the area would accept Baby K.
  • In November of 1992, after Baby K no longer required acute care, she was transferred to a nursing home, but since then had come back three times to the hospital for emergency treatment of breathing difficulties.
  • Each time her condition was stabilized, but the hospital felt it was futile to keep using emergency resources to stabilize Baby K, and filed suit disputing its obligation to treat Baby K, an action with which Baby K’s father agreed, but mother disagreed.

What are the relevant issues?

  • Is a hospital, a facility with limited resources, ethically obligated to treat Baby K, and for that matter, any patient in the emergency room, despite the knowledge that the patient’s condition will never improve?
  • Would denying Baby K care in the emergency room violate the hospital’s obligation to the public? Does Baby K actually have a right to care
  • Since Baby K does not technically meet the criteria for brain death (no activity in the upper brain or brain stem), does it make sense legally and/or morally to keep Baby K on a ventilator with nutrition and hydration?
  • At what point does medicine become burdensome?
  • Should a court consider practical reality when considering that a hospital has limited resources to treat patients, or stay with an idealized idea of the duty of hospitals to treat patients in emergency rooms?
  • Can providing care to Baby K be seen as acting in the baby’s best interests, or is it in reality the mother’s? For that matter, does Baby K have best interests without the ability to think or feel?
  • How should courts consider futility when defining the responsibilities of physicians and hospitals?
  • Can anencephaly be considered a mental disability? Would refusing care be considered disability discrimination?

How was the law interpreted and applied?

  • Baby K’s legal representation argued that the hospital’s refusal to treat Baby K violated EMTALA, the Emergency Medical Treatment and Active Labor Act, which states that all hospitals that take patients insured by Medicare (a federal program), must comply with a federal statute requiring them to treat all patients in an unmistakable emergency, including labor.
  • EMTALA was originally passed in 1986 to prevent patient dumping, where hospitals would try to rid themselves of uninsured and poor patients without providing emergency treatment or minimal stabilization of the patient’s condition. The hospital argued that this was not the kind of case anticipated when the legislation was passed. They also argued that the intent of the law was not to force hospitals to provide care beyond the prevailing standard.
  • However, the judge ruled that, yes, the hospital has a duty to treat any patient in an emergency or active labor, since EMTALA does not make an exceptions for case-by-case circumstances.
  • Although the hospital argued that it would meet the standard of care for an anencephalic infant with nutrition, hydration, and warmth, due to the very short life-expectancy of infants with the disorder, the judge ruled that their duty to treat patients in the emergency room was undeniable due to the plain language of EMTALA.
  • The ruling also stated that “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.” They declined to comment on the morality, but upheld the law as they interpreted it.

Follow-up and analysis

Baby K lived to the age of two and a half, unusually long for an anencephalic baby, but died in the same hospital’s’ emergency room during her sixth time there.

This case shows that legislation can sometimes be applied to situations outside the intended scope. Furthermore, this case also is an important reminder that judges may decline to comment on ethics of a case, and attempt to simply enforce the law.

Baby K’s care was covered through her mother’s private medical insurance, and so the hospital was clearly not attempting patient dumping, the practice EMTALA was designed to prevent. On the other hand, for at least the first four months after her birth, Baby K was being constantly monitored in the intensive care unit, at a cost of about $1,464 per day.

In an ideal world, we could provide the highest quality of care for every patient and spare no expense. However, reality dictates that we ration healthcare, but hospitals are still required to uphold a standard of care in both emergency and non-emergency situations. An example of this is allocation of organs for transplant. One metric considered for allocation is the potential benefit to the patient, or in other words, how much longer the patient will live with the transplant, which in theory should be one way of maximizing the utility of the transplant. While it may be a wasteful use of resources, it is arguable that the mother has the right to control treatment for her child. How much should physicians defer to the wishes of their patients?

New York Times article on Baby K:  Hospital Appeals Ruling on Treating Baby Born with Most of Brain Gone

Also see:

Bioethics and Public Health Law by Orentlicher, Bobinski, and Hall

Casenote Legal Briefs: Health Care Law

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About jslachman381

I'm a Yale graduate who majored in History of Science, Medicine, and Public Health.

View all posts by jslachman381

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