Making Sense of Bioethics: Column 031: Feeding Our Loved Ones: The Modern Anathema of Living With Brain Damage
Many families are faced with decisions about what to do when their loved ones suffer serious brain injury. When individuals are unlikely to come out of so-called “vegetative states,” should we discontinue nourishing them by tube feeding? Is there anything wrong with causing patients in compromised states to die from starvation and dehydration under these circumstances? We all lived through such a decision when Terri Schiavo died in 2005 in Florida. Her death raised disturbing ethical questions which continue to reverberate in society today. The key question is whether other people should be taking it upon themselves to remove feeding tubes that are effectively nourishing individuals who are compromised or disabled.
Oftentimes people fail to grasp several of the key factors regarding Terri’s condition. First, they may mistakenly assume that she was actively dying from something, that she was hanging onto life by a mere thread. But Terri was not dying of any particular disease; she was living with a disability, surrounded by the love of her parents, siblings and friends. She had been living reasonably well with her disability for nearly 15 years, before her estranged husband made the decision to stop feeding her. In many ways, she was like a young, helpless child because of her injury. But she was not actively dying from anything.
A second error that is sometimes made is to imagine that Terri was brain dead. Yet Terri was not even close to being brain dead. This was evident from her ability to initiate movement, her ability to breathe on her own (she was not on a ventilator), and her ability to pass through sleep-wake cycles. Brain dead individuals can never perform these kinds of activities because the organ of the brain has died, and such individuals are, in fact, dead.
A third error that is made in analyzing Terri’s situation is to suppose that tube feeding would be required only if it might improve or cure her vegetative state. Some bioethicists, including sadly some priests, seem to pursue this erroneous line of thought. One of them has written:
Even though her parents disagreed, her spouse… asked that life support in the form of ANH [artificial nutrition and hydration] be removed. Was it ethical or sound? It seems it was. First of all, he maintained that this was her wish. Moreover, given the history of the case and sound medical opinion, he would be on sound ethical grounds if he requested that ANH be removed because it did not offer her hope of benefit.
Tube feeding is not meant to be a direct therapy for brain damage itself. Rather it offers a different kind of benefit, namely, the very real benefit of preventing dehydration and starvation, which nobody ought to die from. Generally speaking, we ought to die from a particular pathology or a sickness, not from a state of dehydration or starvation that could easily be prevented by tube feeding.
A Commentary issued by the Vatican’s Congregation for the Doctrine of the Faith in 2007 describes the benefits of tube feeding in this way:
It does not involve excessive expense; it is within the capacity of an average health-care system, does not of itself require hospitalization, and is proportionate to accomplishing its purpose, which is to keep the patient from dying of starvation and dehydration. It is not, nor is it meant to be, a treatment that cures the patient, but is rather ordinary care aimed at the preservation of life.
Certainly, there will be circumstances and situations where tube feeding may become extraordinary or disproportionate, as when it is no longer effective (the food is not absorbed), when it causes extreme discomfort, pain or serious infection, or when it causes other grave difficulties such as repetitive aspiration (vomiting and breathing the vomit into the lungs, often resulting in pneumonia). Normally, however, tube feeding is not unduly burdensome and is not unduly expensive or difficult, and therefore should be presumed necessary for patients who might need it, unless and until it is shown to no longer provide the benefit of nourishment, or to cause significant complications and harmful side-effects.
Often what lies at the heart of these debates is the view that a life must have a certain amount of “quality” or else it need not be continued. But every life has imperfect qualities, and some have more than others. It is never our place to judge whether another’s life is “worth living.” Our duty is to provide loving care and strong support to those whose “quality of life” may be less than perfect, including those who are sick or those who may be disabled like Terri Schiavo, rather than targeting them for an early demise through the withholding of food and water.
Copyright © 2020, The National Catholic Bioethics Center, Philadelphia, PA. All rights reserved.
