A few months back, I read about a two-year-old child with a terminal cardiac condition who has spent her life in a hospital bed attached to multiple devices that maintained her survival. At the staff’s request, the institution’s ethics committee reviewed the child’s history and prognosis and decided that the equipment could be disconnected. Her mother repeatedly blocked this option, insisting that the child, although frequently sedated, had a “bubbly personality “and was improving. She even contended that the physicians were denying the child’s true condition for their own, clandestine ends.
How do we define life? Is it simply breathing and a heartbeat, even if these are dependent on artificial means? The idea of these bodily functions defining existence arose in the 3rd- 4th centuries A.D. when the Christian Church Fathers decreed that the only ways of achieving heaven were through torture and martyrdom and natural death with “redemptive suffering.” The agony allowed the soul to be cleansed of sin before it could ascend to heaven. This concept of suffering was adopted by what became Catholicism and other Christian denominations with the Reformation. However, none of these denominations could foresee the development of devices that could sustain life artificially, and while several denominations adapted to this technological advancement, others did not.
But what sin could a child confined to a hospital bed accrue to require redemption?
Humanist philosophy would find that treatment could be terminated as it is not curative but only delays death. Humanism is a collection of viewpoints that are unanimous that a person has intrinsic worth separate from any deity. Further, its tenets embrace the concept that people are a product of their culture, that a person is entitled to the maximum “good” within society’s boundaries, emphasizes that disease and suffering must be viewed only through the sufferers’ eyes in determining the continuance of care and that medical care should treat the whole person and not just an illness.
From this perspective, the child’s existence produces little good. She does not interact with the world other than staff and family, cannot accrue or enjoy an independent life, can rarely leave her bed, is reported to have significant pain, and is frequently sedated and unaware of her environment. She is, at best, assisted breathing and an assisted heartbeat, and nothing more. Thus, maintaining her life is denying her the only form of “good” remaining to her: death.
Her situation can also be visualized through Utilitarian philosophy. Here too, the term contains different formulations, but a main precept in Humanism is that an individual has intrinsic worth. However, the accretion of “good” relates to society and not the individual. Although controlling costs is often conflated with Utilitarianism, these philosophies do not necessarily contemplate a dollar value as the societal “good.” Rather, from this perspective, it can be argued that medical equipment and treatments are finite and that maintaining this child limits resources that could be better expended on other humans who could benefit from their use, especially on a short-term basis. A reasonable effort should be applied to aid the child as has been done, but once it is determined that this effort no longer promotes healing, then life-support should be withdrawn. It is no different than in treating cardiac arrest in that, at some point, treatment is deemed futile and discontinued.
A further argument is whether the mother is the best decision-maker for her child as she cannot visualize her daughter’s status through the child’s perspective but looks at her through rose-colored glasses. Her thinking is clouded by the organizations that have supported her legal challenges in the furtherance of their goals and not those of either the mother or her daughter. From the Utilitarian perspective, the mother cannot decide what is a societal “good.” In this instance, physicians and ethics committees are more appropriate arbiters.
Some ethicists contend that a degree of paternalism should be returned to medical practice, although balancing this with patient autonomy would be fraught with difficulties. Although, there is research that some (perhaps many?) patients prefer physician guidance and influence rather than personal autonomy. Indeed, one ethicist has contended that this preference for physician decision-making represents autonomy as the patient chooses the doctor’s input.
The involvement of religious and pro-life groups not only buoys the mother’s resolve and determination to keep her child alive but also makes the child’s survival a political issue (remember Terri Schiavo?) rather than a medical one, an issue best made by those with the fullest understanding of the child’s condition: physicians and ethics committees.
M. Bennet Broner is a medical ethicist.
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