Monday, August 20, 2012

Medical Treatment for Individuals with Disabilities by Elyssa Durant, Ed.M. © 2012

Futile Care for Babies: Baby K and Anencephalic Infants

Baby K is frequently used as the classic example of an infant with a hopeless medical condition. Born with a congenital defect known as anencephaly, Baby K was born without a brain. Photographs of anencephalic infants leave us with an unsettling image of the physical reality ofthis particular birth defect. Dr. Boehm of Vanderbilt University Medical Center gives a graphic description of "monster children," making it easier on our psyches to withdraw medical care.

Anencephaly provides a good example of futile care for infants since it represents the most extreme case of disfigurement and congenital deformity. The case involving Baby K was a landmark ADA decision filed in district court against Fairfax Hospital in Fairfax, Virginia.

Although Baby K was capable of maintaining the most basic life functions at the early stages of her infancy, her mother soon began to bring her to the emergency room to prolong her life when Baby K encountered respiratory failure. The suit filed by Baby K's mother against Fairfax Hospital raises several legal questions regarding the definition of futile care and medical treatment for Americans with disabilities. The case eventually became a landmark ADA (Americans with Disabilities Act) case when the district court ruled that Baby K was being discriminated against because of her anencephaly-clearly a disability under the definition of the ADA.

The court found that Baby K was otherwise qualified for medical treatment, however, they failed to address other critical issues including an agreed upon clinical definition of futile care. Since Baby K was privately insured, the court also did not address the allocation of resources and public funding for medically futile care.

Although the court took an interesting approach to decide this case, I am rather sympathetic to the plight ofthe physicians at Fairfax Hospital since Baby K had little chance of survival beyond her early infancy.

Despite my agreement on the single issue of anencephaly, I would be hesitant to make a generalization regarding futile care for all medically "hopeless" cases-especially those involving degenerative conditions such as Multiple Sclerosis (MS) and other forms of spinal and/or brain trauma.

In the case of Baby K, it is the literal definition (or lack thereof) which I find so troubling. Is medical research on myelin regeneration futile? Are the expenditures for spinal rehabilitation inappropriate? Who has the authority and expertise to make decisions about the quality of life and who decides who shall live and who shall die? What makes one life more valuable to society and worthy of medical expenditures?

Modern medical science is just starting to recognize the strength of the mind-body relationship and traditional scientific models have vastly underestimated the will to live and the ability to recover from traumatic injuries. These modern day "miracles" on the evening news- patients with no hope who suddenly wake up from a twenty-year coma convey a message of hope and cast doubt on the expertise of the American Medical Association.

Published by Elyssa Durant

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