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Feeding our loved ones: The modern anathema of living with brain damage

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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.

I remember discussing her situation with somebody who remarked, “Well, I wouldn’t want to live the way Terri did, with such poor quality of life.” My response was, “Nobody would want to live the way she did -- yet we all face deficits and disabilities that we have to live with. The bigger 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. Terri was an otherwise healthy young person who suffered under the burden of a serious brain injury, which left her unable to do many things on her own. 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. I once did a segment for a national news program where the reporter asked me why Catholics were required to do everything in their power to keep people alive who were basically brain dead, like Terri Schiavo. I had to spend a moment explaining how Terri was not even close to being brain dead, and that she had significant brain function. 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, of course, cannot offer hope of benefit or cure for the vegetative state. Tube feeding is not meant to be a therapy for brain damage. 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. Thus, tube feeding was very effective for Terri, and did offer her benefit. In fact, it enabled her to be nourished for 15 years before being disconnected on March 18, 2005, resulting in her death nearly two weeks later.

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.”

Sometimes patients suppose that tube feeding can be generically declined, by specifying it beforehand in a living will. It would never be ethical, however, to decline an ordinary or proportionate means that is oriented towards preserving life. We are morally obligated to use all such ordinary means, because we must take care of the life we have received as a gift. It is not ours to dispose of or act against, and we cannot ever ethically engage in suicide or euthanasia, nor specify such actions beforehand in written instruments, like living wills.

On the other hand, we should not draw the conclusion, that tube feeding will always be required. 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 struggling with serious disabilities like those in Terri Schiavo’s situation, rather than targeting them for an early demise through the withholding of food and water.

Father Tadeusz Pacholczyk, Ph.D. earned his doctorate in neuroscience from Yale and did post-doctoral work at Harvard. He is a priest of the Diocese of Fall River and serves as the director of education at The National Catholic Bioethics Center in Philadelphia.

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