If That Ever Happens to Me: Making Life and Death Decisions after Terri Schiavo

10 Respect and Care: An Alternative Framework

 10 If it is the individual human being who is important and to whom our responsibilities are owed—rather than an abstract preservation of life—how do we best respond? The drama surrounding the battle over Terri Schiavo’s feeding tube was rich in visual images. One of the most enduring of these images was that of Terri herself in thevideotape that her parents provided to the media—footage that appeared to show Terri responding to her mother’s caring inquiries. Even if one understood that expert doctors who had examined Terri had repeatedly confirmed that she was permanently unconscious, that these videotapes were actually consistent with the vegetative state, and that the footage repeatedly shown on television was deliberately edited from hours of videotape that showed no response from Terri, it was hard to escape a nagging feeling of doubt about her condition and its permanence. Was she responding? She moved her head to the right as her mother spoke to her from that direction. Could she hear? Did she recognize her mother’s voice? Could she see? Was that a smile on Terri’s lips? On the one hand, the videotape revealed Terri’s utter vulnerability and could evoke feelings of protectiveness toward people who are severely disabled. On the other hand, many people, both in surveys and in casual conversation, revealed that whatever condition Terri was in—even if that might have been a slight smile on her face—it would be an intolerable existence for them and they would choose death in that situation over life. The controversy surrounding the removal of Terri’s feeding tube seemed to be in large part about these conflicting reactions—the need to protect vulnerable life and the desire of individuals to choose their own destiny. And our ensconced constitutional framework, resPeCt And CAre An AlternAtIVe frAmework  r e s P e c t A n d c A r e which pits the state’s interest in preserving life against the individual ’s right to decide matters affecting his or her body, reinforces this perception of two dominant competing values. Self-Determination versus Preservation of Life? But as we’ve seen, self-determination is not an easy concept to apply when the patient lacks the present ability to exercise it.We may say we’re respecting self-determination in these contexts, but often we can only make careful approximations of what the patient would want. Even when people are competent to make their own decisions, we cannot always be confident that the decisions they are making are truly, authentically, and voluntarily theirown—because of course they’ve been influenced by social, cultural, and familial conditions. The problem posed by the formerly competent patient is many times more perplexing, as evidenced in Terri’s case. The idea of protection of human life is similarlyattractive in its apparent simplicity and just as elusive in its practical, consistent application .Our societydaily ignores or denies the need to protect human life. Our government policies permit the ill health and even death of Americans due to lack of adequate health care. In 2005, the year Terri died, approximately 45 million individuals in the United States lacked health insurance, 8 million of those children. The Institute of Medicine has estimated that 18,000 Americans died in 2000 because of inadequate health care due to their uninsured status. Many of the political leaders and advocacy groups most stridently opposed to removing Terri’s feeding tube have expressed no public remorse over the tens of thousands of innocent lives lost in Iraq—few are outright pacifists—nor have they expressed the same degree of public advocacy toward the tens of millions of people worldwide whose lives are in danger from lack of clean water. During the seven years of litigation over the removal of one person’s feeding tube, at least 40 million children died from hunger-related causes. I’d wager that not one of them was allotted a feature on the evening news, nor would a visit to the most prominent pro-life Web sites find featured links through which someone can help save these kinds of lives.  r e s P e c t A n d c A r e Of course, we might well understand that when forced to make direct choices about a particular individual’s life support rather than indirect choices about mechanisms to finance care for many...