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Wednesday, March 23, 2005

Allowed to die? Part 2

There are a number of things that bother me about the heartwrenching and complicated Terri Schindler-Schiavo case—and I am using "complicated" here in the verb form (not that it 'is complicated' so much as that things 'have complicated' it)—and although I could spend the next two hours writing about what these things that bother me are, I am going to restrict myself to the four things that bother me the most.

Now before anyone accuses me of becoming sympathetic with this case only because it has within the last year received pronounced media attention and that I have, consequently, fallen prey to the emotional rhetoric, not having examined the extensive facts of the case (there has been a lot of such accusations being thrown around various forums and blogs), please be advised that I have spent several, often consecutive hours poring over considerable amounts of history (as far back as February of 1990), court rulings, documents, and statements (going back to March of 2000), media editorials, et cetera, opinions and arguments that are sympathetic towards Terri Schindler-Schiavo and her parents, as well arguments and opinions that are sympathetic towards Michael Schiavo and Circuit Court Judge George Greer. Although I may not have informed myself enough to serve as an expert on any matter involving the case, I have informed myself enough to hold a legitimate opinion about it. You're free to disagree with me; you are not free to accuse me of ignorance.

One of the first things that bothers me is a prevailing opinion, originating with Michael Schiavo and affirmed by sympathizers of his view, that Terri should be "allowed to die," and I will tell you why this bothers me—Terri is not dying. By that I mean to say that she is not suffering from a terminal illness. She is not even on any sort of life support system—at least, not any "life support system" that differs from what any other human being is on, that is, food and water. Like some victims of Huntington's Disease, Terri cannot properly swallow. During my early twenties, I had the privelege of working in care homes for physically and mentally disabled adults and experienced, first-hand, people with this sort of problem. Yet not once did it ever occur to me nor did I ever hear anyone suggest that such people should be "allowed to die," and for good reason—they weren't dying. They suffered from neurologic conditions that impaired swallowing, but they had otherwise an intact, functional gastrointestinal tract. Like Terri. And like Terri, they too were not on any form of life support—their heart, like Terri's, beat on its own, their lungs functioned on their own, like Terri's. No one ever suggested that these people should be "allowed to die" because, like Terri, they were not dying. They were physically and mentally disabled, like Terri, one of them quite severly (the other workers always volunteered me to change his diapers; what fun), and certainly a great many of us able-bodied individuals are sure that we could not bear to live like that, but the point will be stressed once more here: neither they, nor others like them, nor Terri, are considered to be "dying." If Terri is not dying, it makes no sense to say that she should be "allowed to die."

Another thing that bothers me is the persistent expression of percutaneous endoscopic gastrostomy (PEG) as "life support." It simply is not. This evening I had a nice pasta dish dressed in a cheese sauce with seasoned beef—all right, it was Kraft Dinner with ground beef stirred in—and a glass of milk. In a forensic sense, perhaps one could call this life support, for surely food and water go to support life. But who in their right mind would sincerely call meals a "life support system"? It is simply absurd, if you ask me. And yet the only difference between myself and Terri is that I swallowed my nutrients and hydration. Is that what makes the difference for these people? If you can swallow, it's food; if you cannot swallow, it's life support? What kind of logic is this? I encourage them, or anyone else, to inquire after the American College of Gastroenterology, the American Society for Gastrointestinal Endoscopy, the Society of American Gastrointestinal and Endoscopic Surgeons, or any other physicians and surgeons with expertise in gastroenterology, and ask them, "Is a percutaneous endoscopic gastrostomy considered to be a life support system?"

I am also bothered by Michael's allegation, propagated by his sympathizers, that Terri expressed a desire to die, and that the removal of the PEG is nothing more than Michael deferring to Terri's wishes. This is not a tangential issue; it is, in fact, one of the very hubs of the entire controversy, as seen throughout most of the judicial proceedings. Had Terri never uttered a word about it, in any context or form, it seems quite likely that court rulings would have turned out very differently. Given that this question is so central to the entire issue, why has it been given the weight it has when it is established by nothing more compelling than hearsay? Did Terri say that, if she was ever in a situation were she would require a PEG, she would rather be allowed to just die? Pay very careful attention to this answer: "No." In fact, I'm fairly confident (and both her parents and Michael could affirm or deny this) that during the first 26 years of Terri's life, she never even heard of a PEG. Let me tell you what happened, according to the materials I've gone over. Michael alleges that Terri made a comment, after watching a movie (about Karen Quinlan), about how she wouldn't want to be on a life support system like that. Four things I want to say about this. First, it was a comment made after watching a movie! The idea that comments you make after watching a movie could one day decide whether you live or die would sure make you think more carefully about what you say when the credits roll, hmm? Second, Karen Quinlan was on a respirator; Terri is not. Third, Terri is not on any life support system at all, other than that which every one of us is on—food. Fourth, Karen was in a coma; Terri is not.

Related to this, I am bothered by Judge Greer's incompetent handling of this issue. When Diane Meyer, a friend of Terri's, testified in court about the 1982 comment Terri made after the movie, Greer said he thought Meyer's testimony was not credible because she described the conversation in the present tense. Pardon me? You are basing the decision whether to end someone's life on your confusion over verb tense? "The court is mystified as to how these present tense verbs would have been used some six years after the death of Karen Ann Quinlin [sic]," he wrote. First of all, it is not agreed that Michael's hearsay constitutes "clear and convincing evidence." Second of all, Greer's confusion over verb tense is not a justifiable basis to end Terri's life. Third, Greer's mystification over present tense verbs notwithstanding, it was highly appropriate for that conversation to have occurred in the present tense since Quinlan didn't die when they pulled the plug on her in 1976—she didn't die until 1985, three years after their conversation in 1982! And Greer has been informed of this. It is one of the many reasons Terri's parents want him to void his 2000 ruling. Even though that conversation did not occur "six years after" Quinlan's death but, rather, three years prior to it, Greer denied the motion. Furthermore, Michael's lead attorney, George Felos, told the Springfield Times that this point was insignificant and not worthy of revisiting. Excuse me? We are talking about starving Terri to death here, based on a 'comment she made after watching a movie; this makes Diane Meyer's testimony eminently significant!

Wesley J. Smith, an Attorney and Consultant for the International Task Force on Euthanasia and Assisted Suicide and a board member of The Center for Bioethics and Culture, recounted a very relevant and thought-provoking story that I am going to share here at this point. I want you to read this carefull, and consider the implications it has to Terri's fight [republished without edit]:
Many dehydration cases have involved such casual statements. The most disturbing of these was that of Marjorie Nighbert, which, ironically, also occurred in Florida. Marjorie was a successful Ohio businesswoman who was visiting her family in Alabama when she was felled by a stroke that left her disabled but not terminally ill. After being stabilized, she was moved to a nursing home in Florida where, it was hoped, she could be rehabilitated to relearn how to chew and swallow without danger of aspiration. To ensure she was nourished, she was provided a feeding tube.

This presented an excruciating quandary for her brother Maynard, who had a general power of attorney from Marjorie (not power of attorney for health care), as a consequence of which he became her surrogate medical decision-maker. Marjorie had once told her brother that she didn't want a feeding tube if she were terminally ill. Despite the fact that she was not dying, however, Maynard believed that if she were unable to be weaned off the tube, she would have wanted to die rather than live using the tube for nourishment. When she did not improve, he ordered the tube removed.

As she was slowly dehydrating to death, Marjorie began to ask the staff for food and water. In response to her pleas, members of the nursing staff surreptitiously gave her small amounts. One distraught staffer eventually blew the whistle, leading to a state investigation and a temporary restraining order requiring that Marjorie be nourished

Circuit Court Judge Jere Tolton received the case and appointed attorney William F. Stone to represent Nighbert and to conduct a 24-hour inquiry, the sole issue being whether Marjorie was competent to rescind her power of attorney and make her own decisions. After the rushed investigation, Stone was forced to report to the judge that she was not competent at that time. She had, after all been intentionally malnourished for several weeks. Stone particularly noted that he had been unable to determine whether she was competent when the dehydration commenced.

With Stone's report in hand, the judge ruled that the dehydration should be completed, apparently on the theory that Marjorie did not have the competence to request the medical treatment of food and water. Before an appalled Stone could appeal, Nighbert died on April 6, 1995.

Society's approach to the so-called "right to die" has become far too casual. None of us should be made to die because of statements made in casual conversations or due to misconstrued oral directives. The time has come for the best legal minds in the country to draft model legislation that will tighten existing laws so as to give every reasonable legal benefit of the doubt to life rather than, as too often happens now, to slow death by dehydration. [read]
As Family Research Council President Tony Perkins said, "We can debate which level of governments, and which branch of governments offer Terri the most protection. But this we must not debate: the deliberate, public, and publicly sanctioned dehydration and starvation of a disabled woman is a profound affront to Americans' deepest values—and it must halt." [read]