Schiavo – more from Bioethics

I think this case has exposed some weaknesses in our dealing with end-of-life issues.

First, what happens when a surrogate (a person who makes decisions in the patients’ best interest, named by the patient, thereby differentiating from proxy, who is appointed by the court and bears the burden of proving their choice is congruent with the choice the patient would have made) presents a conflict of interest? In this case (as in many others), a possible conflict of interest is present due to a life insurance policy.

Second, who designates the proxy? How do you rank the closeness of family members? States do perform this ranking, but how commonly is this ranking accepted? And aren’t there exceptions abound?

The website at http://abstractappeal.com/schiavo/infopage.html is very informative and in my opinion should raise questions that any physician would raise eyebrows at. At its core, the trial judge has ruled that Terri Schiavo should be actively starved to death, without allowing anyone to even try to feed her orally.

First, the original ruling to remove the tube was made on what Judge Greer called “clear and convincing evidence.” The judge’s ruling is very interesting since he found the statements of Michael Schiavo and his siblings to be credible, but found the statement by a friend of Terri’s to be unconvincing because she used the “wrong” tense and her memories were too specific during the trial. So the only non-family member testifying was dismissed on purely subjective grounds. How a subjective determination of who is credible in a “he said, she said” situation is “clear and convincing” is unclear to me, especially in a life and death situation.

Second, a month later (March 2000) the judge refused to allow a swallowing test to be performed. Three doctors testified, Jay E. Carpenter, MD, John David Young, MD (both for the parents) and James Barnhill, MD (for the husband; he was also the physician selected by the husband to be Terri’s ‘treating physician’). A quick Google found info only on Carpenter (Medical School at Stanford, Internship at Baylor College of Medicine, Residency at U South Florida, Board-certified in Internal Med), the other two didn’t appear except for one link to a book on pressure sores, presumably by Young. In any case, none of the docs appear to be authorities, or even on the faculty of a medical school with expertise in the disabled. The two docs testified that they examined Terri, found some evidence that she might be able to swallow (e.g., she was not drooling and thus must have been swallowing her saliva). Barnhill testified that swallowing tests had been performed 8 years earlier, and a speech pathologist had evaluated her annually from 93 to 97, and therefore, no additional testing was necessary. The judge decided that Dr. Young was not credible because he “would not concede that her treating physician would be in a better position than he to make that diagnosis.” In other words, Dr. Young was wrong because he thought the other doctor was wrong. The judge gave no reason for ignoring the testimony of Dr. Carpenter. Can you imagine how a medical student would be reamed if he/she tried to justify a treatment plan based on an 8 year old test that was contradicted by two physical exams?

The Court of Appeals, in January 2001, ruled that the trial judge had made the right decision. Interestingly, they framed it as whether Terri “would choose to continue the constant nursing care and the supporting tubes in hopes that a miracle would somehow recreate her missing brain tissue, or whether she would wish to permit a natural death process to take its course and for her family members and loved ones to be free to continue their lives.” They totally ignore the question of whether her life, as it is now, is worth living. By throwing up a straw man, “recreating her missing brain tissue”, and softening her death as ‘freeing’ her loved ones, the court reveals a bias that should cause any disabled person to pause.

In November 2002, the trial court had another hearing, with multiple experts on each side. What is interesting is that the judge determined that the only thing that would change the order to remove the feeding tube was whether or not “new treatment offers sufficient promise of increased cognitive function” that Terri could change her mind. In other words, the only thing that would be decided was whether she could be ‘cured.’ Of course the trial judge found she could not be cured.

In September 2003 the parents brought the testimony of three speech pathologists to request that Terri undergo additional eight weeks of therapy. The ruling says that the “3 speech professionals clearly demonstrate that they disagree with the previous rulings of this court…” and “they do not believe that Terri is in a persistent vegetative state. Therefore, any conclusion that they have reached is fatally flawed.” In other words, they disagree with the court, therefore they are wrong. The judge also rules that the earlier request to “have Terri Schiavo ‘undergo a swallowing test to determine if she can orally consume nutrition and hydration without a feeding tube” is “precisely the same request which is currently before the court.” So he believes a test is the same thing as 8 weeks of therapy, and substitutes his judgment over that of three trained medical professionals.

Finally, on March 8, Judge Greer denied the parents petition to feed Terri by mouth claiming it is an ‘experimental procedure.’ So despite the fact that the most recent swallowing study is now 13 years ago, several medical professionals of various training have testified that she may be able to swallow and that a study and therapy should be performed, the judge has ruled that Terri should be starved to death without even trying a ‘natural’ means of feeding. As a physician, I shudder at the implications of this path.

In my experience with brain injured patients who have swallowing problems, in most cases the tube is placed for the convenience of the caregivers. A person generates a couple of liters of saliva a day, and if they don’t drool and can swallow the saliva, they can usually also swallow similar amounts of feeding solution. It just takes time, many hours, which is not feasible in most care situations. In all likelihood Terri could swallow enough to remain hydrated and perhaps even fed, but it would take many hours of patient, slow feeding. The tube may be nothing more than a convenience, like an electric bed, diapers, etc. that make caregivers’ jobs easier. What is most disturbing is that the court has actively prevented any evaluation of this possibility.